More information than my
little brain can handle. First things first, the good news is she doesn't see
me falling off the cliff anytime soon. I was convinced I was dying. She said
overall my MRI looked really good and was actually more concerned with stabilizing
my systemic disease from seeing the PET, liver mostly.
The worst news is that "it is what it is." Basically the radiation, chemos, and things that did save my life every time this disease progressed, have basically caused irreversible brain damage. My wobbles, fatigue, memory loss, all long term side effects that I will not be able to get rid of, just live with. I cried.
The worst news is that "it is what it is." Basically the radiation, chemos, and things that did save my life every time this disease progressed, have basically caused irreversible brain damage. My wobbles, fatigue, memory loss, all long term side effects that I will not be able to get rid of, just live with. I cried.
That means, no biking, no
walking without assistance, no hiking, no dirty buggy racing, no nothing that
gives me googley eyes. I feel blessed as it could be much worse. I have friends
who are paralyzed or deceased from LM, I just have to yet again adjust to a new
normal. Not one I was ready for. I never even considered that these symptoms
were here for good, just thougt they’d eventually kill me. It’s crazy.
The good news from that is forming an awesome plan to help with those effects. They could help some, but again, will never fix. There are things she would like to add to my medications to protect my brain from getting worse and ordered an at home evaluation to protect me from falling and making matters worse. She also ordered physical and occupational therapy because lying in bed for the last 25 days isn't going to do anyone any good.
She addressed the seizure issue and we are going to wean off Keppra and go onto Depokyt and Vimpat. She said it's not a mean drug like Keppra. I can't remember what we said about cytology but likely still every 4 weeks to relieve pressure in the brain, though I shared my fear of messing around with things up there.
She was super excited to share a trial that is being done where you get s biopsy of the tumor and they study the tissue against drugs. Kind of like the Guardant blood draw and how it compares your DNA to drugs and what those outcomes are. I will likely do that the next time my numbers are up and have the ability to heal quickly.
Dr. Dunbar is going to talk to Dr May ASAP and will call us with a plan in the evening. Likely tomorrow as Dr May is off today. She had some ideas about new systemic drugs and such, and really thinks we need to focus on the liver. I believe her. I am watching the numbers and even with my beet juice my ALT is climbing.
A change in the winds just occurred hopefully giving me more unexpected time to love and live life to the fullest. One day at a time. One step in front of the other, well wide stance for me, but let's take it slow. I made my biggest book yet, 222 pages of the last year because we did SO much.
Thank you for the many who were on their knees this morning. God has a plan and a path and I'm sure we just veered onto the right fork.
Love to all. Best quality of life is her goal and mine. I feel covered and blessed.
The good news from that is forming an awesome plan to help with those effects. They could help some, but again, will never fix. There are things she would like to add to my medications to protect my brain from getting worse and ordered an at home evaluation to protect me from falling and making matters worse. She also ordered physical and occupational therapy because lying in bed for the last 25 days isn't going to do anyone any good.
She addressed the seizure issue and we are going to wean off Keppra and go onto Depokyt and Vimpat. She said it's not a mean drug like Keppra. I can't remember what we said about cytology but likely still every 4 weeks to relieve pressure in the brain, though I shared my fear of messing around with things up there.
She was super excited to share a trial that is being done where you get s biopsy of the tumor and they study the tissue against drugs. Kind of like the Guardant blood draw and how it compares your DNA to drugs and what those outcomes are. I will likely do that the next time my numbers are up and have the ability to heal quickly.
Dr. Dunbar is going to talk to Dr May ASAP and will call us with a plan in the evening. Likely tomorrow as Dr May is off today. She had some ideas about new systemic drugs and such, and really thinks we need to focus on the liver. I believe her. I am watching the numbers and even with my beet juice my ALT is climbing.
A change in the winds just occurred hopefully giving me more unexpected time to love and live life to the fullest. One day at a time. One step in front of the other, well wide stance for me, but let's take it slow. I made my biggest book yet, 222 pages of the last year because we did SO much.
Thank you for the many who were on their knees this morning. God has a plan and a path and I'm sure we just veered onto the right fork.
Love to all. Best quality of life is her goal and mine. I feel covered and blessed.
I Love you, Nadine...you write so beautifully, as if i am standing next to you, hearing you tell me this story. I only wish this wasn't your story or anybody's story, really!!! Thank you so much, my dear 1st friend. I want you to know that everything you're going through is not in vain. There isn't a single day that goes by that you and your struggle are not on my mind. You teach us all so much, whether you realize it or not. Don't worry too much about the limitations the condition or the doctors have described. You have never been one to be held back by limits. You are powerful beyond words and our God is watching over you and your precious family every step of the way. Thinking of you so much and praying for you always!!! Big big hug my sweet friend...<3 <3 <3
ReplyDeleteWas praying for you this morning. Just for ultimate healing so that you can be here with your babies and hubby for such a long time to come. I know that its probably hard to hear that these might be lasting side effects, but from what I know of you and have read in your blogs if anyone can overcome those side effects you can!!! You are so strong, and you are clearly fighting back, and I am so glad they have a good plan of action to start helping as much as possible with the side effects. Little victories at a time, yay fir good MRI results!!!
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