Lita57
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Just had another major "roid rage."
I feel so bad for my family, but I can't help what the steroids are doing in my brain and to my personality. I'm a flawed human being after all. I can't sleep and now I want to kill everyone around me, ha ha. Any little thing can set me off, especially now that my death prep file is almost complete and I really don't have much else to distract me from this NEW reality. Yes, the bitter truth is now starting to sink in BIG TIME after a week of being in both shock and whirling dirvish mode, getting everything done. A crash was inevitable, I suppose.
And guess what? It's only going to get worse once I start the Namenda Alzheimer's meds. Major side effects: increased aggression and agitation, nausea, vomiting, diarrhea, weight gain, swelling of hands and feet, increased heart rhythm and increased blood pressure, headaches, more dizziness....oh, what a fun time we're all gonna have at Chez Lita!
Gonna double down on the CBD tincture tonight and hope for a better day tomorrow.
Well, that's my update for today 😜
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Lita, I'm sure it is beyond overwhelming!!! Remember to be extra kind and forgiving to yourself. Simplify your schedule and to-do list as much as possible, and give yourself lots of alone time to absorb it all, or just sit and listen to music or whatever you can to enjoy the moment. I know you know all of this!!!
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I have been there. I went into medically induced rage after a couple weeks on a relatively mild pain killer. Why would I turn like that on the people who love me and care for me? I still can't forgive myself but now that I am off them, I know it was the meds and not, exactly, me.
>Z<
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Lita I've followed your posts since joining some of the threads you are on. You are an inspiration through your courageous approach to devastating news, also your insight and humor. I will be thinking of you, sending healing energies as I go through my Qui Qong practices the next few days. Your energy and organization is amazing..
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Lita, remind me the Alzheimer's medicine was supposed to have what good side effect? They think it will help you why? All the side effects you list seems to make brain stuff worse rather than better.
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Good morning Lita, I hope you were able to get some sleep. You are definitely on an emotional roller coaster. I agree that a crash was inevitable. But it is what it is. Now that the crash has occurred, hopefully you will be able to start climbing uphill. We are all living in a scary place right now. Don't be hard on yourself, I'm sure everything you are feeling is completely normal. Maybe try to plan something very small to do everyday that you and the family will enjoy and give you something to look forward to. It doesn't have to be anything big or that you even have to leave the house. Like maybe an old fashioned ice cream party where you churn your own ice cream. Tell stories while it's making. Just a suggestion. We do a lot of family things like that. Just concentrate on living in the moment. I'm sure it's very difficult, so be kind to yourself. Lifting you up in prayer. Hoping you find peace today
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Dear Lita,
You are a kick-ass inspiration. Just wanted to put that out there.
Jennifer
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Lita- I need your full name and address to get the package out on Monday .
Love you and pray for you.
Diana.
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Lita,
I was diagnosed with bone and lymph nodemets almost a year ago and haven't posted in a while. Your advice has helped me get through some very tough times! I will pray for you and your family during this difficult time!
Christine
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The stone says HOPE.
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Thanks, ladies. I just contacted Jettyextracts. They are an organization in So. California that provides FREE CBD oil/tinctures to cancer patients.
They should be contacting me within the week to verify my info, etc. I've got my license uploaded to my laptop, so it should be easy to get all the paperwork sent for this. If I continue to pursue the cannabis/CBD avenue, it's going to get quite expensive as I titrate up to the maximum dosage the marijuana dr wants me on to pound these brain mets down and preserving some brain function.
I've noticed my right eye has total UP/DOWN double vision. Instead to seeing just one horizontal line of type, I see TWO, one on top of the other. This is one of the things another late brain met sister had to deal with. When it got really bad, she could NO LONGER type or read. Let's hope and pray that the Namenda coupled with the CBD oil can help with that. Rest her soul, she passed about a month ago. She was only 45 yo.
I'm also finding that I have to just do ONE THING at a time or I forget what I was doing, just a couple of seconds later.
Who knows where I'll be, mental-function wise next weekend! I want to go to the Opera (Cosi Fan Tutti) next Sunday, but will I even be able to read the subtitles above the stage? We can only pray.
I have asked my daughter to help me update this thread if/when I'm no longer able to do so.
I'm fervently PRAYING that will NOT be the case. Keep sucking that CBD oil down, Lita!!!
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love it Kaption☺️
Lita it doesn't necessarily mean you will be stuck with all those nasty side effects . I'm hoping you have none of them and that instead the drugs knock out your cancer. You are one strong woman I have no doubt this treatment will work . You have seen all the others with their good news it's just a matter of finding the right combo and going with it believing in it 100%. Agree upping the cbd dosage is a great idea.
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Lita, I continue to pray for you. I am a former opera singer. Go to Cosi even if you can't read the subtitles. The music is glorious. Mozart does a heart good. Mozart is also considered one of the best composers to listen to for your brain.
Take good care of yourself.
Mary
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Dear Lita,
I'm sure your family understands what's happening with your "roid" rage so don't be too hard on yourself. Thinking of you this weekend. I hope you have an easy week and that you feel better and enjoy that much needed sleep.
Love and hugs - Amy
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Lita, if you feel that you can sit for the opera, go. I agree with Marylark. Close your eyes and let the music transport you. ❤️0
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Lita definitely go to the Opera. Music is sooo good for all of us. Sending you hugs
Bab
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Lita, totally agree with the others about the opera. Go anyway! Music is good for the soul
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Don't worry about reading the super titles (those are above the stage). Opera moves you with the emotion in the singers voice and the music. Enjoy!
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Lita I love your sense of humor. Your posts are so well written, it's very hard to believe that you have brain mets. I wonder, if you put a patch on your eye with double vision maybe you could see better to read and write posts.
Your face mask looks all too familiar. I had to wear one while receiving rads to C2-5. I thought I looked a little like "Dr. Hannibal Lector". That was 15 years ago. I threw my mask away, I hope you get to put yours in the trash, too.
I'm glad you can use Cannabis to help you through this but I don't know about that Alzheimer's med. It sounds terrible. I do know know about roid rage AND my family knows to stay away if I'm on steroids. But, I know you have to take them in this situation. When I had to take them, I did take Ambien for sleep. It worked for me. I made a rule for myself that I only took one after I was settled in bed and planned not to get up till morning.
As long as we can read your feisty posts and your rants about your second husband, we will know you are OKAY.
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Oh Lita, I remember that mask well. I had them play music while I was having rads and that helped. I won't be at home tonight for your candle tribute so sending one to you now. Sending hugs and love to you.
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Well, I had another miserable night.
Went to bed at a reasonable time BUT ONLY SLEPT ONE DAMN HOUR! Thank you steroids and damn Mr. Cancer! Basically I just lied in bed most of the night. thought about my uncertain future, and PRAYED....prayed for all you dear women who are going thru this misery (in your own individual ways) and for the victims of Harvey and Irma.
I was disappointed that the CBD:THC didn't let me sleep a little longer - maybe just one more hour? Is that too much to ask for?. I started the new Alzheimer's med this morning (very small, 5 mg pill), so we'll see how that works. Have to stay hydrated really well for that.
Getting my candles ready....
Thanks for all the support,
Love, Lita
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Lita - a candle and a small glass of Chateau Miraval will be toasting you from SoCal tonight. Please go to the opera and listen even if subtitles are blurry. It's the sound that reverberates in our bodies and souls. Be kind to yourself. Hearing/sound is one of the first senses to come back and the last to leave us. Revel in some Mozart as Babs and Marylark suggest. May you find some peace tonight with CBD and feel the love and support from so many.
Your fan - Claire
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Lita~ all of us are thinking of you and giving you all the strength possible. You're amazing. I hope you can feel the love! Much love ~M~
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Lita not sleeping could cause havoc with anyone. I take Ambien. I read about it in many blogs, most sayyou don't have to take the 10mg at once. You could take half and when you wake up and you will find you need more sleep take another half right away. It seems to work better for me. Also, if that does not work for you, there is Ambien slow release that doctors hate to prescribe because it's more work for them, but it may work better for you.
It will take sometime, but i followed Mara and after a miserable time, she is doing well. Something to look forward to. Lighting candle tonight!!!
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Lita. I'll be lighting a candle tonight for you. Be kind to yourself about the roids. I just want to hide in a closet but my DH is starting to understand that it's not me. They gave me Ativan and it let me sleep a bit. Sending prayer
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Lita, I'm right there with you with no sleep. I was up all night also. Steroids twice a day is horrible for sleep. Candles will be our around the world for you tonight. We are all there supporting you. Lifting you and everyone else up in prayer. Hope we both can get some rest tonight.
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I had a long candle so I decided to get started. I hesitated to put anyone's name on this prayer. I am concerned about everyone dealing with transitions in treatment ... Linda, LMWL, Dani, Babs, Patty, Pat, Wiepg... leaving out several people ... you know who you are. Keeping you all in my thoughts today.
But, of course, Lita and Kandy are slogging through rough times at the moment. You are on my mind this beautiful Sunday in September.
>Z<
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Lita, wanted to add my love to the rest. I am praying that God will grant you rest and peace with yourself. God knows your soul and loves you immeasurably more than you could imagine.
Chris
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Lighting my candle now for you Lita. I will be thinking of all of you who share your very personal stories, advice, especially your trial research. You are my support group. Tomorrow I weed my garden. Lita inspired me. Now to figure out what wine Lita drinks so I can join her in a toast!
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