When the going gets tough…

     Share the graces. But share the sufferings as well. We had our scan a few nights ago and it came back with very little to no tumor growth. The radiation doctor was very pleased. It’s still there, but it isn’t getting larger. What a blessing. Sadly, that’s not all that showed up. I had another MRI of the spine done to see what the deal is with all this nerve pain from the LP. I was so convinced that it was nerve damage. My hips and lower back and knee have been in so much pain. Last night we received a phone call from one of the nurses asking if we could come back in because the spinal scan showed nodules (the cancer) down my neck and spine. It spread. 
     So that’s not good. At all. It’s called leptomenigeal spread. I was under the impression that brain cancer couldn’t spread but I guess the spine and neck are exceptions? The fact that it spread is pretty unusual. It happens in less than 10% of all Glioblastoma patients. Of course. Everything about me, my cancer, everything. It’s all very rare and unusual but somehow I managed to get it all! 

     We are still coming down from the high at Lourdes so trying to process all of this is a lot. I know I shouldn’t have, but I asked the doctor if this was going to kill me. He said, “yes.” Clearly he didn’t read the book “The Best Yes” or he would’ve known he could have said “no.” It’s funny, when it happened, it didn’t make me mad, but now, I’m thinking what is the doctors purpose to just say “yes.” Sure, it’s LIKELY, but you just don’t ever know how someone will die. So don’t tell me yes this cancer will be what kills you unless you go by the name Jesus Christ. Ok thanks. 

     So what now? Well, it’s kind of like starting over but not. This isn’t something I can have surgery on, unfortunately. He said it’s like sprinkling grass seed everywhere. After a few days you’ll see some growth from some and not the others but you know the seeds are there and that they will grow. First thing on the line up card will be radiation…again. I’ll start a week from today but it’s only a week long this time (which means a much higher dosage of the radiation than when I had it before). They will radiate my neck and my spine (separately). I’m pretty anxious about the radiation this go around. He said it causes nausea and that’s already a struggle over here so I’m praying it’s not as bad as he made it sound. In addition to that, because of where they radiating, it will most likely take out my ovaries. This news wasn’t as devastating as I thought it would be. Probably because I can’t imagine being healthy enough to have a baby anytime soon. The other thing it could affect would be my voice because they are radiating right there. The thought of never singing again is heartbreaking. But not being here is more heartbreaking. If not singing or talking again is what I have to do to stay here, I would sacrifice it in an instant. 

     After my week of radiation I’ll have a procedure to put a port IN my brain. I’ve already had two brain surgeries so what’s a third? Maybe third times the charm? It’s called Ommaya if you’re curiosity gets the best of you. They place the port under the skin and administer chemo that way so it goes directly into your brain (and in my case will go to my spine). And yes, when that starts, I will be taking 2 types of chemo at once. Ugh. BUT WAIT, THERES MORE! I’ll also begin immunotherapy with this as well. I wasn’t a candidate for it before but now I am so let’s see what happens! The doctor kept calling it black magic so it must be good stuff. There’s a clinical trial going on right now with immunotherapy that I don’t qualify for but they just want to do it so I think that’s even better since trials have placebos. 

     Even after an incredible pilgrimage to Lourdes, hearing this news shook us. It’s still shaking us some. But Why? When has God left us once through out all of this? He hasn’t. I already said, it has to be this bad in order for it to be the testimony that it’s going to be. I’m praying we can stop here and press forward with the healing now. 

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36 thoughts on “When the going gets tough…

  1. I’m continuing to hold you daily in prayers; may God continue to be the source of all of your comfort, strength, and hope.

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  2. My sweet, sweet friend… my heart is breaking for you, I’m crying, and praying… for all of you. Your strength is inspirational beyond measure. I can honestly tell you without a doubt that I’m not sure I would have half the strength you have if I was going through even half of what you have undergone. You are a beautiful, wonderful, strong, faithful women, as well as a wonderful friend, and an inspiration to all those who have the pleasure of knowing you, no matter if it’s for an instant, for a few months… or a lifetime.
    Much love and prayers,

    Vicki

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  3. You are front and center of my prayers. I know we don’t know each other, but I do know your brother-in-law Andrew and your MIL. That’s how I first found your blog and your story. You are such an amazing woman. How could I not keep you in all my prayers? Thank you for blogging for your fans!

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  4. I’m feeling your disappointing news deep in my heart. I’m praying still for COMPLETE healing though!!!!!..I just want you to know we care…and sending love!😘

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  5. Praying the prayers of all the healing saints….let the veils of heaven carry away all of your cancer cells for God’s healing touch. Refreshed prayers for you and your family.

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  6. We are all grateful for your posts … it must be difficult to write at times … thank you for sharing the way you do!
    Our prayers continue … and God continues to be faithful! May his wisdom and peace be with you … in Jesus precious name, Amen.
    Love you!
    ❤❤❤

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  7. PS … you should write a Google review for the doomsday doctor … complete with tips for improvement in the important areas of “bed side manor” and HOPE. 😞
    I love your response! 😁

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  8. Praying for your healing and strength as you battle. Your peace will come from knowing you are not in this battle alone. God is with you every step of the way and many are lifting you in prayer. God bless you and your family.

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  9. Oh, sweet Stephanie..I am praying for you. I hear your strength through your words and the last paragraph is as courageous as I have ever known. Keep the faith my friend… “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.” Lamentations 3:22-23

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  10. Your faith through all of this and trust is the Lord is already such a great testimony! Continued prayers for a complete and total healing! 🙏🏻

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  11. Dear Stephanie, I have read your blog from the beginning but have never commented until this entry!
    Last night, some 20 prayer warriors quietly and reverently gathered together in our precious chapel. Kneeling before Our Lord in the Blessed Sacrament, as we prayed a rosary of the Luminous mysteries, all interceeding in your name, I knew/heard/felt a certain and clear message. I shared with a few after but felt unsure sharing with others because well maybe I was just suppose to accept the situation and just keep quiet. That false hope thing.
    In reading your entry tonight I knew I had to share.
    The message I received was that for this to be the huge miracle for you and Father Stanley this had to happen. These new findings had to be documented so that when the miracle happens there is NO way to NOT believe it was all God!!
    You are such a gift to all of us. We are blessed by your faith, your candor and your certain belief that your Heavenly Father is ever with you. Much love. Trish

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  12. You know, when I got the Moms Group text with your update this week I had the weirdest reaction… I got angry. I thought, “How DARE this cancer rear its ugly head yet again??” It just seems so deliberately offensive. Just… ugh. I love your trust and your faith through the fear. Steve & I said a rosary last night for you since we couldn’t get to the grotto or adoration what with the kids’ sleep schedule. We are and will continue to storm the gates of heaven on your behalf. I’ve got everyone I know praying for you, and evem people I don’t know, from the Facebook group of people who’ve gone on the Awakening retreat I went to in college. I want to say “You can beat this” but it is the Lord our GOD who shall remain victorious and can bring defeat to this awful disease, and by His hand shall you dance away from this nightmare!

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  13. Dear Stephanie,
    It saddened me to hear the news. 😪.
    But I am with you in sorority and prayer.
    Praying for that miracle to heal you completely.
    Hugs and love from Ecuador

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  14. Oh, gosh. Thank you for bringing us on your journey. I continue to pray for you and your family. You are such a light in this world.

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  15. Prayers for you & your family continue.

    Just as a side note, try not to write off clinical trials altogether. In the oncology world, trials don’t have placebos. By that stage of the trial, the “new” drug is going up against a standard, already FDA approved treatment. If you have the opportunity to speak with the director of a clinical trial, those people are BRILLIANT and can really help explain how things work.

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  16. Please know so many are praying for you, lifting your family up. You are right, God has not left you. He promises He never will. Hold onto that promise, fiercely. Four years ago, my late husband was diagnosed with pancreatic cancer. Though three and a half months of fighting for his earthly life to continue felt so long and difficult, we also experienced great joy, comfort and incredible love. Keep sharing your story, Stephanie, you are one of His Brightest Stars. You are pointing people to see God’s Light through the looming darkness, frustration and disappointment. You, Beautiful Lady, are a reflection of Him. What an honor to be!
    Praying for you.
    “Even If” by MercyMe immediately came to mind when I read this post you shared. ❤️

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  17. Sweet Stephanie, while walking into the chapel with the others who had gathered to pray for you, I too felt deep within that this needs to happen for your miracle to be complete. Stephanie, you have brought so many souls to Christ through the testimony you have given throughout your journey. Those who did not know Christ now do through your suffering. I do not know why God has chosen you for this journey, but your continuous faithful “yes” is touching so many. The fruits you are planting are numerous, sweet girl. Whenever I hear the song ” Here I Am Lord”, I think of you. Saying yes to everything He has allowed for His glory. I believe in miracles, and I believe you will be one of them. You are loved, and you are being lifted continually in prayer. God bless you.

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  18. Your in my prayers… Just because you can’t hear your voice doesn’t mean you can’t sing! make a few recordings…one of you telling yourself good bye visitor don’t let the door hit you on the butt on the way out! One of you telling your fam that you love them! One that says thank you I am blessed! Your a slice of heavens daily reminder for me…Go Steph!

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  19. Oh, Stephanie! So very sorry to read that you have encountered another stumbling block. You tromp that stumbling block to sand, Stephanie. Prayers continue daily for you. You’re one strong young woman. Keep up your hard work. You know God is holding you in His Hands, and will help you every step of this journey.

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  20. Time for another miracle….and continued prayers.
    🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏

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  21. Stephanie, I feel for you, strongly…I know this is just NOT good news, but I am so proud of your strength, and how well you have done so far, and I will continue always to pray for you and your family through whatever comes. I know you don’t know me at all but a friend told me early on about your situation and your blog since my husband died during treatment of glioblastoma only 5-1/2 weeks after we found out that anything at all was wrong with him. He had to be put on a blood thinner due to a blood clot in his lung after his surgery to remove the largest tumor (I am thinking it could have been caused by him wanting to go snowmobiling with my brother and some buddies who live here, about 10 days after he got out of the hospital? But he loved it and they went way up high in the mountains near our town and one guy led them in a wonderful prayer!)…then when they had been doing radiation for 2 weeks to his brain, a large artery was affected and he had a brain bleed. So his cause of death was not technically glioblastoma multiforme, but a brain bleed. He died 3/18/14. Anyway…you are just simply amazing and I love your posts and I pray for you lots and get tingles…

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  22. You are absolutely right, it has to be THIS bad for your testimony to be what it’s going to be! Thank you for bringing our family closer to Christ. We pray for you every day!

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  23. Stephanie I’ve read some really good things about immunotherapy and it’s treatment of glioblastoma. God just wants you to spread the word a little longer as he cures you. Still praying. Love you. gramgram

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  24. Keeping you in daily prayer for healing. You are a daily testimony to our faith and strength for me. Blessings,
    Donna

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  25. I am continuing to pray for you and your family. You are right, the biggest scar makes the best story and your journey will be a great testimony! Your daughter is little but she sees how strong and beautiful her mommy is.

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