Not bad news 

I feel like I finally have a real update on my health! We met with my new neuro oncologist yesterday and talked about my current health and the plan moving forward. It was a seven hour appointment. That’s right, SEVEN HOURS. It was a little much but we got a lot of information so it wasn’t a waste of time. I ended up doing an MRI earlier than the post four weeks because we won’t be back there for a couple more months. The doctor said it’s hard to read MRIs so quickly after radiation because everything looks so swollen still. BUT the doctor said he was pleased with how it looked and he believes that it looks the same as the post op scan (maybe a little bigger but it could easily be scar tissue). The radiation oncologist still needs to review the new scan but I’m relieved to hear some “not bad news.”  
Because my headaches have returned, they put me back on steroids (fourth times a charm?) The upside is that the steroids are only for the next 5 days and that’s it. So hopefully it will help with the pressure and headaches in the mean time and won’t be awful to get off of. 
The biggest update I have is that I’ll be starting optune in the next week or so. What is optune? Here is the official definition: Optune is a wearable and portable, FDA-approved device that has been shown in clinical trials to safely deliver continuous therapy to the area of your brain where your GBM tumor is located.


So it’s great in the world of glioblastoma. But it doesn’t come without a catch. I (or most likely Michael) will be shaving my head every 3 days and wearing this fancy cap 24 hours a day for the foreseeable future. In no way am I excited about this but I’m thankful it exists and I’m hoping and praying it’s all worth it and that it works. It’s supposed to hit the cancer cells, stunt the growth, and kill them. 

I’m anxious about this next chapter, even though I’ve tried to prepare myself for it mentally. But I don’t know if anything will be able to prepare me for the looks and the questions and the night we actually have to shave it. It’s just hair and it will be fine, it’s just going to be an adjustment. But I will do everything in my power to be here for my family, even if I have to look like an alien.  I know Sarah will have questions and even though he is so sweet about it, I know that Michael probably won’t ENJOY shaving his wife’s head so please pray that it goes smoothly and that we all learn to accept this new normal quickly. 

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18 thoughts on “Not bad news 

  1. Prayers for all of you as you embrace this next step. I have heard the intimacy of the head shaving between husband and wife /family will bring them even closer! God will be with you through it all! Sarah will get to see that “superheroes” have a variety of cool looks ! Hugs & Love ! ❤️❤️❤️

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  2. Oh Stephanie even though we don’t know each other my heart has cried with you and has also cheered with you over the victories. God is so good and has placed everthing in place for you and your precious family. Prayers continue for all of you in your next step in this journey. Jesus I trust in you. Jesus I trust in you. Jesus I trust in you. God’s peace be with you.

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  3. So funny just as I hit send I realized I wrote Sarah your beautiful gift from above at the beginning. Maybe that was God’s way of showing me I need to keep your sweet baby girl in my prayers as she too is going through this with her momma. Stephanie may you feel God’s peace, love and strength as you continue on this journey. God bless. Theresa

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  4. Recently sold our parents house and yesterday I was going through some papers and found this. Thought of you right away. Cancer is so Limited:
    It cannot cripple love.
    It cannot shatter hope.
    It cannot corrode Faith.
    It cannot eat away peace.
    I cannot destroy confidence.
    It cannot kill friendship.
    It cannot shut out memories.
    It cannot silence courage.
    I cannot invade the soul.
    It cannot reduce eternal life.
    It cannot quench the spirit.
    It cannot lesson the Power of the Resurrection.

    Prayers and Positive Thoughts continue.
    (p.s. my Fight Tee Shirt arrived yesterday)

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  5. Oh, that Optune thing sounds amazing…I can tell that the medical industry is working hard to find ways to cure Glioblastoma! I am so glad to hear that because the disease really change the life of me and my three daughters when my husband died from it in March 2014 after only finding out 5-1/2 weeks before that there was anything wrong…I know it is not going to be fun to have to shave your head every 3 days and wear that on your head but you’ll adjust and it will help you get well! Everything like that, we adjust…that’s part of life. 🙂 I am so amazed at you! You are awesome! God is awesome and He is helping you!

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  6. Hugs to you!! I must admit I felt a little sad last post that headache had returned but on the other side we all have headaches so it could be something more ordinary *praying* I hope for the first big shave you go to salon. After it would be easier for Michael to upkeep. It’s the initial shock that is hardest. The thing is that when I see your pictures it’s not the hair that grabs me. It’s your beautiful smile and glowing eyes. It will be hard though as hair is part of our person and identity. Great thing is it comes back. Much love and many prayers.

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  7. Hi Stephanie. We prayed for you last night at synagogue in New Jersey. Thank you for sharing your experience with everyone via your blog. You are inspiring. Sending love and positive vibes your way.

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  8. If it can make you feel better, my man didn’t mind shaving my head at all. Is there anyway you can cover this thing in a scarf?
    Good luck!

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  9. No hair is every woman’s dream. We just don’t know it. No more hair stuck in the drain. No more bad hair days. No more worries of lice. No more knots. Just rock the new look with a pretty scarf or none at all. The Lord giveth and the Lord takes. So in this case, the Lord gives you a pretty scarf and takes away the tumor.

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  10. Tbis sounds very interesting treatment. I have to admit I don’t like the headaches coming back but I pray and know that Jesus knows what he is doing. My friend had breast cancer and she shaved her head right away. She was scared and unsure but she rocks and believe it or not had fun with it. It is,what it is she said. Her hairdresser did it. This,will be difficult for Michael but he can do.it …he wants to honor you and take care of you and honor God. Both of you amaze me. You got this

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  11. I don’t know you Stephanie, but if ANYone is strong enough to go through this next chapter, it is you and Michael … and little Sarah, in her way, too. So sorry the headaches have come back. 😦 but hopefully this Optune thing will work well for you. Have to say, the word sounds a bit like “opportunity”. As in the opportunity to show your tenant to the door … once and for all! All my love and prayers.

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  12. I’m happy to hear the “not bad ” news. You are certainly one of God’s special “agents” to teach the rest of us patience and trust.
    I know this Optune cap is not going to be easy but you have such grace it will not distract from your beauty, which is from within as well as outside. !
    I continue to pray for your healing and for your family.

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  13. What wonderful news to be wearing this – but I know…and it’s so “minor” in the scheme of things…. that you are upset about losing your hair completely. Wish we could do something for you — maybe find you a sexy new wig? How about going BLONDE? *wink* Praying for you honey – and your family as well. Patty

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