One step forward, two steps back

     Up and down and up and down…and down. This past week has been my roughest yet. I haven’t been able to eat or even take medicine without getting sick coming up on a week now. Not to mention the middle of the night “awake time” that my body has instated. I’m usually up for about 3-5 hours. It’s miserable. I’ve lost so much weight, about 30 pounds total now. So it’s not good. I’m starting to look like a cancer patient, you know, weak, pale, puking all the time. The stereotypical cancer patient. I don’t like it, but this is the cross that I must bare.  
     I had no idea that chemo could come in so many shapes and sizes, not to mention the length of time people have to get infusions of chemo. It ranges anywhere from a pill to getting chemo through a port for 10 hours each time they go in. TEN HOURS. Counting my blessings there. 
     Last week, while waiting for them to call me back for my chemo to the brain, I ran into an elderly woman and her daughter. The woman has a GBM (same cancer as I do) and was there to discuss optune with her doctor, even though she had decided not to do it. So she immediately started picking my brain (which is great because I love to share my experiences, especially if it can help someone else). Long story short, after just talking with me about it for 3 minutes, she had a change of heart. Optune works and although it’s not a permanent solution and it looks like an alien cap, I’m so thankful I am able to use it. It’s humbling to walk around with this crazy thing and get all the stares. 
     I’ll end on something positive! We were gifted with tickets to go to universal (so fun to watch the kids play!) and had a blast. I didn’t get to stay as long as I hoped but I lasted longer than anyone thought I would! Plus, I got to take optune off for the day because of the rain and heat. Not a great combo! Also, notice how my optune now has its own hat! Fancy, I know. 

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25 thoughts on “One step forward, two steps back

  1. So sorry you had an extremely difficult week.I love how you always acknowledge the good in your life. Our God is still using you as an instrument and your attitude remains so uplifting! Hang in there! Love and prayers! 💙💙💙

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  2. Hoping you start to feel better! I’m sorry you’ve been having a rough week. Continuing to keep you in my prayers. You have a beautiful smile! Carole from Philly

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  3. Stephanie- I just wanted to thank you for sharing your experience about Dr sughrue in oklahoma city. I had surgery last fridaythe 11th and he was able to get 95-100% of the brain tumor out! I would not be where I am right now if it wasnt for you.i feel so greatful for coming across your story and I thank you so much for this.

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  4. You look wonderful and I’m just so sorry that this has been such a difficult week. I hope this next week will be better! Glad you and the family got to go to Universal!

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  5. You are still so pretty, I promise. Will be asking the Angel Raphael to help the nausea subside and to help you sleep better.
    P.S. thank you so much for telling us about him. I did not have a need to pray for healing at the time of your post on him but recently we found out the son I’m 34 weeks pregnant with has potential major health issues, and asking Raphael to pray for him and help heal him has helped immensely with getting through this scary time. In fact I think we’ll make it his middle name. And I would have no idea about him if not for you!

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  6. I’m sorry this week has been so hard. You still have that beautiful smile in spite if it all! I’m touched by how many people your story has effected in a positive way. God bless you and comfort you in your journey to complete healing.

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  7. Have you tried sea sickness wrist bands for the nausea? They helped me greatly when I was going through chemo. Stay positive. It makes a difference. Best wishes for a speedy recovery.

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  8. It’s crazy how God uses little things to show how involved he is in our lives. Optune may not be glamorous, but it’s cool that it’s making a difference! Sending prayers for strength!!

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  9. My continued prayers for you!!!!! How brave- setting a “Fashion Statement” !! Love from your Parish family,
    and many others as well!!!!! Your smile radiates the love of Jesus in and through and with you!!!!! Peace and
    Blessings to you and your family

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  10. You should know that your “Fighter” shirts were a big hit with my daughter’s lady roommates…all 18 of them. Your blog has been shared, too. You can expect some serious prayer coming out of that group of lovely ladies. We all get positive energy from your smile!

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  11. Stephanie and Michael, we met you at St. John’s in Edmond OK. Still praying for both of you and praising God for your patience and good humor through it all!!!! You are in our thoughts.

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  12. Praying for you honey — from what I see in the photos you look GOOD – you don’t look like a cancer patient from what I can see. Praying that the puking ENDS and you feel GOOD for today and many days to come. So happy the lady is going to do Optune too! It’s a shame you can’t write funny messages on your optune hat 😀 Hugs hon.

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