Ryan got off the steroids for the brain swelling on August 1st. Same day as his brain MRI. We were hoping for a good resolution of the swelling while keeping in mind it would go away completely.
Apparently his brain had other plans. The swelling is virtually exactly the same as it was in June when he got admitted to the hospital for 4 days for the swelling. The steroids worked slightly to make the symptoms go away - aka persistent headaches, frequent seizures (every few days or daily)
And as of yesterday and today; headaches are returning, and the cloudiness that he felt before the hospital admission is slowly coming back.
How can decadron not work? That’s the toughest steroid they have. I literally don’t understand and can’t find an answer as to why it is not working.. I’m just frustrated, sad, and feel like time is running out and I couldn’t be more upset. I want to fix it. And I can’t..
Has anyone had experience with brain Mets and steroids? Luckily the only thing we pulled from this, is the fact that the brain is no better, but not worse either. So.. we are stable.
Anyone? 😢
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kellyOd
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I have no medical advice but I feel your pain and frustration. Hang in there. The brain is no worse as you said and maybe he needs a longer course of steroids. Sending you and Ryan warm hugs.
Please let us know thoughts from the docs. I don’t know what allows and blocks meds in crossing the blood brain barrier so I defer to those with that experience.
But I do know what it’s like to have to dance with uncertainty and powerlessness to effect melanoma directly. It’s painful to face and a challenge to our hope to remember that being present, as much as we can, in love and truth is powerful and transformative. Our circumstance may not change, we may be changed by how we live through and in the circumstance. It’s a different kind of healing.
This whole journey is so hard. Try to keep positive. I’m not one to talk. I worry about my son constantly but I recently saw a card in a shop that said Inside Every Worrier is a Warrior. That card spoke to me . Everyone tells me not to worry because it doesn’t help but I worry anyway. So I liked that card because I do feel like a warrior- always there to do whatever needs to be done for my son- and I can tell that you are a warrior, too. So tomorrow will come and you will do what you need to do to get answers and to help your man ( and yourself).
He has liquid Ativan for emergencies just Incase he goes into a cluster.. but that’s never happened before thank god. He’s on a very high dose of anticonvulsants.. 4,000mg keppra a day and 400mg Vimpat a day.. the brain is so fragile.. it’s so complex. Yet so simple. And anything can make it spaz out.
Time is a luxury we just don’t have. And I feel like the hour glass is running out some days. A race I’ll never win..
He said to me the other day that marriage is stupid, cause he’s a dead man. & that broke my heart in 1 million different ways. Just another reminder ya know.. that time just isn’t on our side 😔
I feel that pressure of time not being on our side.
I'm also reminded that it has never been on our side from the moment we enter this life. But living with serious cancer rips the veil off our compartmentalization and artificial distance from awareness of thanos.
I hear in your post grief: from Ryan, from you, for each other and the loss of current dreams. Wading through this grief so you can find some current contentment, perhaps even occasional joy in the unexpected WoW moments that DO occur when we are all so acutely aware of the fragility of life, is something I try to intentionally turn my face to seek. It doesn't mean the grief isn't there, but it does allow it a companion to give some perspective in my day to day life that I choose to keep walking rather than staying in bed (a very real choice, and one that I have availed myself of on some days).
Let there be peace, even if in a moment, for you and Ryan, and for all of us.
Cannot give you any advice buT I hear you and you are in my heart and prayers. Hope you have a good talk to the docs about the meds and keep us updated please.
My thoughts and prayers have been with you and Ryan. How is he doing? How are you? What are the doctors saying? I am hoping they will start the steroids again, and they will help. Mark doesn’t seem to ever be able to come off the steroids for long. It sucks. You really are amazing Kelly. Taking it day by day is all we have.
Thanks so much for the prayers.. they are powerful for sure. He is doing okay! The steroids got re prescribed; after two days of being on them again he feels less cloudy already. I guess the first round just wasn’t enough.
They are saying that they are still thinking along the lines of radiation necrosis; but it’s border line. If it continues to worsen then they will have to go back in and essentially “de bulk” the cavity again and biopsy the tissue to see if it’s active tumor.
How is mark doing? Is he still on a low dose steroid?
So glad to hear Ryan is back on the steroids and they are helping. I know it’s hard to keep going back and forth with the steroids. I will pray for clarity for the Doctors to make a good decision for Ryan, and that what ever they decide goes well, and he continues to do well again. Mark is doing ok. He has been on 20 mg of Prednisone for a while now. He just doesn’t seem to be able to come off them. His next Pet Scan is Sept 9th. It’s really stressful waiting every 3 months for scans, but this is our new life. I just pray that it is still good news. God has blessed us with much, and we are so grateful.
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