I’m alive!

There were several times over the weekend I started to pick up the computer to type and then decided not to. I just didn’t need to. I needed to be with my family and I did just that. It only took me a week to realize I never finished my last blog entry. I’d say that’s a step in the right direction. I’ll go back and finish it at some point but for now I’ll leave it. It gives it character. That’s why I’m not blogging as often though…because I forget that I’m doing it.

Quick update: I’m alive. No regrowth. My body didn’t handle the last round of chemo very well, which is unfortunate, because it means I’ll be starting daily chemo, essentially a lower dose every day (forever?) to see if my body can handle it better. I imagine it won’t be too different from the daily chemo I did during radiation and that wasn’t so bad. I spent some time learning how to draw eyebrows this week. Drawing eyebrows “from scratch” is a serious skill I never realized I didn’t have. It is tough.I’m dreading trying to figure out my eyelashes.

So I’ve come up with this special ritual for my optune. It’s a little ridiculous but what isn’t ridiculous about optune? As I’ve said before, every 3 days the stickers come off and we have to re shave my head. I was so focused on the fact that I was going to have a shaved head that I wasn’t too concerned with the fact that I would actually be wearing something on it, which can get very hot and very annoying. So now every 3 days, I plan my time accordingly around my optune changes. I take time to do my make up, I get dressed, I take a hot bath…you get the picture. Those 6 hours of optune free bliss. Do I want to put a wig on so I have some dang hair or do I want to walk around with nothing because it’s so dang hot!  Typically I do the second because of how hot it is but I did make an exception today. For those of you who don’t know by now, grey is the color for brain cancer, which is why we wear a lot of grey around here. A new friend of mine mailed me this new special hat. It may look like your typical “I love someone with brain cancer” hat but I assure you it isn’t. The top has a hole crochet into it to house my optune cords. Guys. It’s an optune hat! My device has it’s first accessory! Maybe I should bedazzle the optune…

 

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Today marks 4 months ago that we found out I had a brain tumor. Interestingly enough, I just came from the place I found out. In some ways it seems like forever and in other ways it seems like this journey is just beginning. We are beginning to find our “new normal” but it’s still pretty weird. The dinner table conversation is still working itself out. but I’m definitely starting to feel more comfortable in my own skin, which is good,  because the  questions have started coming and I can’t wait!

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25 thoughts on “I’m alive!

  1. LOVE LOVE LOVE the hat! ❤ So very cool and creative! And thanks for the updates, regardless of when you get to them! We LOVE hearing from you! Your optimism and hope is true inspiration! And we all continue to pray for your full healing (in JESUS' name!)! (((((((((((HUGS)))))))))))) to the family!

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  2. Oh, my dear Stephanie,
    God is in control…I was coming to find your last email so I could tell you (in a comment..can’t figure out how to email you) how often you are in my prayers and how much you are loved by our God.
    My quadriplegic friend Kenneth, (age 61, 44 years completely paralyzed) knows of you and can truly report that throughout his past AND current struggles, God has been UTTERLY FAITHFUL.
    Cannot figure out how to send you a photo either, but every one that you post deepens my desire for God to be your JOY, REFUGE, and STRENGTH.
    jude&Jesus

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  3. That hat is awesome! Wow, I’m impressed! And you look beautiful and you ARE beautiful inside and out and I don’t even really know you, but now I feel like I do from your blog. My friend Becky’s niece Johanna told me about you because she knew that my husband had glioblastoma and she thought I would be interested. And I am. And I pray for you always.

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  4. Wow! You and your friend should go into business with the hats…..you both would make a fortune!! 😀😀

    Just out of curiosity, I wonder if she could use lighter weight material, since it’s so hot. You might even be able to just cut the top out of a baseball or summer sock hat.

    I don’t know how you’re doing it, but I love your optimism.

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  5. Love the hat. What a wonderful gift not only the hay but especially the gift of no new growth. God is so good all the time. Prayers continue for healing and peace for you and your family. God bless

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  6. Love the hat! Very chic! And I love you too Stephanie. I pray for you everyday and know God is holding you and your sweet family in His hand.
    Susie Houston

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  7. So hapy to have read your update this morning … had begun to worry just a bit! No new growth … how wonderful! I’ m just sorry you’re looking at daily chemo now 😐 Hopefully you WILL tolerate it well. Thoughts and prayers for you all continue.

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  8. You look adorable in that hat! I hope you can take the other treatment better. I’m still praying and thinking about you every day. Hugs you girlie!

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  9. Stephanie, I read your story today in our employee newsletter at OU Medical Center. Your story is amazing. I pray that you continue to inspire others by sharing your story and reminding us that we are all here for a purpose. Thank you for speaking up and boldly that GOD IS NOT DEAD!

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  10. Stephanie I am a friend of Dixie Taylor’s. I am addicted to your posts. You are in my prayers daily and then some. Keep up the fight. You are going to win!

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  11. What an awesome hat!! And an awesome friend, for thinking of it. 🙂

    Funny you should talk about the struggle of drawing eyebrows–I just saw a commercial yesterday for something called “3 Second Brow”. It’s basically an eyebrow stamp!! I think you can get them at Target… just an idea. 😀

    We’re still praying for ya!

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  12. LOVE THE HAT! I’ll start looking at my grey clothes a little different now! I saw someone mention the 3 second brow – I was going to recommend the same thing! Then you’re not “drawing” them on (that’s gotta be hard!). Just something to help you with your day and help you feel good ;D (like makeup makes us girls feel better sometimes!). I’m sorry you have to take daily chemo – but I hope you feel ok while taking it. Hugs honey

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  13. Love your new hat…yes you should add some “bling”….:)
    Keep up the fight, I know God has a bigger and better plan for you. My prayers of patience and healing continue.

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  14. Hello, Stephanie

    This is Paula. We met at Alpha Table One at St. Dominic’s in February.

    This morning I caught up to speed with your blog. Wow! You have gone international with your encouraging story!!

    As a 24 years breast cancer survivor myself, it was devastating to read last week the reports of Olivia Newto-John’s breast cancer had returned after 25 years of remission. What lifted me out of the funk was reading your blog and watching the national and international news coverage of your case.

    Your story has come full circle for me.

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  15. Hello, Stephanie

    This is Paula. We met at Alpha Table One at St. Dominic’s in February.

    This morning I caught up to speed with your blog. Wow! You have gone international with your encouraging story!!

    As a 24 years breast cancer survivor myself, it was devastating to read last week the reports of Olivia Newton-John’s breast cancer had returned after 25 years of remission. What lifted me out of the funk was reading your blog and watching the national and international news coverage of your case.

    Your story has come full circle for me.

    Like

  16. Good Morning Stephanie,
    Is this a 3rd day*?
    Just reread your “I’m alive” post of May 31 and am seeing those words show up before my eyes.
    Rejoicing with you, who are alive,
    that on the 3rd day, Jesus too was “alive”!
    May your 3 day cycle continue to deepen your friendship with Him.

    This is an evening prayer my Mother taught me nearly 70 years ago:

    Now I lay me down to sleep
    I pray Thee Lord
    for slumber deep.
    In the darkness
    Drive away
    all fears and worries
    of the day.
    Grant me I pray
    my daily needs
    And teach me kindly
    words and deeds.
    Be near me when I wake again
    And guard all those I love
    AMEN.

    You are in my prayers, Warrior Woman,

    jude&Jesus

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  17. Dear Stephanie,
    Your dear Uncle Dave Alexander shared your story with me. I only understand your situation from my story with my Father, funny his name was Dave. He was diagnosed with a brain tumor at age 65 in 2002. He was super positive and taught me a lot about Faith and Endurance. He had a really great attitude, his line was “Live Today the Positive Way”, and that is what it is all about really. I am inspired by your Faith and your attitude. You’re keeping your mind and spirit along the right path. Critical illness is never easy. I wanted to share something with you that my Mom said. Her name is Mary. Sort of like a “Forest Gump” way of talking. But anyway, she said that “Life is like riding waves in a boat out at sea, the boat ebbs and flows with the waves, but if you keep God Jehovah in your prayers he is in the boat with you, and your course will stay steady to shore.” I think about that always. I just wanted to let you know that I am proud of you and your attitude. Keep up the fine fight and the endurance for the “REAL LIFE” like 1 Tim. 6:12 encourages by continuing to “fight the fine fight of the faith,” we can successfully win the battle against our imperfect flesh.—
    Love and Encouragement from Renay Scheffer in Sugar Land, Texas
    I love these scriptures to help with coping with life’s anxieties:
    “Throw your burden on Jehovah, and he will sustain you. Never will he allow the righteous one to fall.”
    Psalm 55:22
    “The plans of the diligent surely lead to success, but all who are hasty surely head for poverty.”
    Proverbs 21:5
    “Do not be afraid, for I am with you. Do not be anxious, for I am your God. I will fortify you, yes, I will help you, I will really hold on to you with my right hand of righteousness.”
    Isaiah 41:10
    “Who of you by being anxious can add one cubit to his life span?”
    Matthew 6:27
    “So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles.”
    Matthew 6:34
    “Make sure of the more important things.”
    Philippians 1:10
    “God is not partial, but in every nation the man who fears him and does what is right is acceptable to him.”—Acts 10:34, 35.
    “May people know that you, whose name is Jehovah, you alone are the Most High over all the earth.”
    Psalm 83:18
    “Know that Jehovah is God. He is the one who made us, and we belong to him.”
    Psalm 100:3
    “I am Jehovah. That is my name; I give my glory to no one else, nor my praise to graven images.”
    Isaiah 42:8
    “Everyone who calls on the name of Jehovah will be saved.”
    Romans 10:13
    “Of course, every house is constructed by someone, but the one who constructed all things is God.”
    Hebrews 3:4
    “Lift up your eyes to heaven and see. Who has created these things? It is the One who brings out their army by number; he calls them all by name. Because of his vast dynamic energy and his awe-inspiring power, not one of them is missing.”
    Isaiah 40:26

    I wanted to share a positive song with you. Link: https://wol.jw.org/en/wol/d/r1/lp-e/1102009145

    Liked by 1 person

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