Lita57
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Yeah for glasses! I hope the radiation is treating you well.
Thinking of you.
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Good morning Lita,
Stopping by to say hello...I'm thinking of you. Hope you're doing well with rads.
Am
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Good morning, Lita! Sending hugs and prayers your way!
Claudia
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Saw RO briefly yesterday b4 brain zap #5.
He thinks we're still on the best course for me...continuing with WBR, given my 20+ brain mets, the leptomeningeal activity, the size of the tumors, etc.
He's "guardedly" optimistic that WBR will give me "a few" more months. But...everything else in my body - liver, pancreas, abdomen, large lymph node near stomach/pancreas, scapula, pelvis, hips, femur, cervical/thoracic/lumbar spine, etc. - has been totally running amok since I've been off Xeloda (capecitabine) for over 3 wks now. So who knows? (But I know I still have a LOT of fight left in me and God's not finished yet...)
RO wants me to stay on the Alzheimer's drugs for at LEAST 6 months. We will do another MRI brain scan about 6 weeks after WBR is complete because the rads will continue boring down into the brain for weeks hence...and I'll no doubt sustain even MORE cognitive dysfunction
(. No driving until we see the results from the next scan. He's honestly SHOCKED that I haven't had any seizures or totally lost consciousness (gone into a COMA) because of the size, location and number of all my 20+ brain tumors and all the leptomeningeal involvement. That's GOD, ladies! He is sustaining me (sorry if I offended any of my agnostic/aetheist sisters...), but that's the TRUTH!I'll update you regarding my phone conference call with my MO tomorrow (Friday). We're supposed to chat around noon. I have already put a list of talking points together: 1) scheduling a port installation for the Taxol infusions; 2) when do we start the IV infusions; 3) brain PILL-FORM options that are out there to keep the brain mets under control that I can take while on Taxol (if any); 4) possible trials for I may qualify; 5) getting my DH's FMLA paperwork squared away; etc.
That's my story today...and I'm stickin' to it!
Off to Bible study with the ladies in Newark to get my "mind" off all this shiz.
Blessing to you all,
Lita
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Love you Lita! You're going to show Mr. C who's boss! He's no match for you!
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Amen Lita,
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Praying for you Lita. The RO doesn't know the army you have in prayer.
I know who goes before me
I know who stands behindThe God of angel armies
Is always by my sideThe one who reigns forever
He is a friend of mineThe God of angel armies
Is always by my sideChris Tomlin "Whom Shall I Fear"
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Lita and Mary.....the poem "Whom Shall I Fear" says it all. It is God's army of angels that gives us the strength to carry on and fight this yucky disease. Stick close to your angels and call on them for help.
May God bless you and keep you safe!
Diane
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Lita. You hang tough girl!!!! Seems like you defy and anaze. everyone!
Bab
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Lita,
I truly love your fighting spirit and that you know God is with you every step of the way! We are all here cheering you on too. It's so wonderful how we can all come together to lift each other up in spirit. I feel you give me such strength through your posts and unwavering faith. Mr. C definitely has a battle on his hands with you!
Sending you a big virtual hug,
Sheri
PS. Marylark - I love, love, love Chris Tomlin's songs
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Lita,
Thank you for your upbeat spirit and courage. Reading your posts is truly inspiring!
Kimberly
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Lita sending you prayers hopes and good thoughts. This is a cross post but I have no problem repeating myself to congratulate you on how awesome it is that you defying your ROs expectations regarding your brain met side effects !!!!!!
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thanks everyone, I love chris tomlin's songs
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Lighting my candle reminded me of how much I miss doing that! The lovely ambiance and scent filled room. I did not raise a glass of wine but put in a silent prayer for you Lita. You tenacity to still get over to your Bible study inspires me so much. Think of you everyday Lita and hope the new glasses look smashing!
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Lita, you are truly an amazing woman! May the love of God give you strength and comfort. I'm praying for you everyday.
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Lita,
Sending out prayers and positive thoughts! Thanks for keeping us updated. I hope your days have many moments of smiles, laughs, snorts, and giggles with friends and family to keep you going.
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Thinking of you Lita. Sending lots of prayers and love your way. You are a beautiful example of trusting and I'm thankful I've been given the opportunity to read your stories. All glory and honor to God. You are a blessing. Xoxo
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Lita, Your mind is working fine. You are an inspiration and your words are hopeful and inspiring to all who read them. God is in your life, I see God in your words. Bless you.
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Praying for you Lita! I believe in the power of prayer!!!!
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lita your faith shouldn't never be apologized. God put you on this forum to share yourself worldwide. Your wit courage and faith have inspired many. We often ask in our prayers why me. Maybe this is your "why" sharing yourself to give others strength. For i have benefited from your streng
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Happy Friday Lita. Will you get weekend off from rads? Hope so.
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Yes, Patty...I will get the weekend off from rads!!!
DD and I are going to see Mozart's Cosi Fan Tutti on Sunday, and then DH will pick us up and take us to dinner down the street from the San Jose Opera theater.
I'm still trying to do "normal" things as much as I can - given the coming impact of brain rads' dysfunction looming closer. I may have to deal with declining motor issues, too, sai the RO. (I have been noticing more numbness and weakness on my left side, but I guess that just comes with the WBR territory.)
I'll have more updates later after my phone convo with the MO. Hoping to feel a little easier once we get the port installation scheduled and my first IV infusions on the calendar.
I just pray that my body can handle the Taxol and all the other meds I have to take during this ordeal.
L
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Lita we are with you every inch of the way. RO is learning slowly but surely whom he's dealing with
What brain pill are you referring to? Mozart, not bad, enjoy!!0 -
Mom, I have to take the Namenda/Memantine Alzheimer's pills. It's a balancing act because I have to stagger them with all the other stuff I'm taking.
So, here's an update from my phone appt with the MO this afternoon:
1) Have to call head charge nurse in Oncology MONDAY, 9/18 to re-schedule first TAXOL infusion to take place about a week after my last WBR session (last one is on 9/20), and believe me, this can't come SOON enough. I'm having some pain issues in my lower lumbar area as those mets were shown as very active on the last PET scan. (I haven't been on any chemo at all for almost a month now).
2) Palliative Care Referral – I'll be getting a call some time next week to set up appt with the dr who handles this care. Was assured this is NOT hospice care, just an added layer of help/support to deal with pain, mobility and family issues. I have officially been declared "END STAGE" now.
3) As soon as FLU shots are available, I have to get one.
4) Port Placement will take place at some point in the FUTURE; MO just wants me on the chemo calandar NOW. We'll worry about the port later.
5) A follow-up Brain MRI for possibly November (needs to be at least 6 wks out!)
6) DH needs to go to Med Secretaries on MONDAY to get the paperwork back for FMLA! (Family Medical Leave) He LOST the copy of the last one that had MO's license number and stuff on it. If he had ONLY made a copy of that, we could have cut and pasted stuff into the boxes and we would be all set to go. No problem. I had a MAJOR 'roid rage over that. AND the kitchen window was open...so the whole damn neighborhood probably heard it. Oh well. I'm getting to the point where I honestly don't give an EFF anymore. I'm doing the BEST I CAN to take care of all my SHIZ. I got my whole damn DEATH BINDER together for DH and DD...so I shouldn't be expected to take care of HIS effin' FMLA work stuff, too! It's NOT my job on the line, people. A lesser person would have just crawled into bed, pulled the covers up over her brain mets addled head and let THEM DO EVERYTHING for them. And you all personally know people who would do just that.
Yes, that's my little RANT for today. I think I'm entitled to it after the last two miserable weeks I've had. And I'M STILL trying to live as normally as I can with increasing spinal mets pain...getting up and dressing every day, folding laundry, making the odd meal, emptying the dishwasher, while I can, dusting my room. Damned to heck if I'm gonna just SIT in the La-Z-Boy and WAIT to die!!!!
The DON'Ts: a) We will NOT be setting up an appt with neuro-oncologists because Kaiser neuro-oncologists only deal with PRIMARY brain tumors such as neuroblastomas and glioblastomas
b) Temadar pills DO NOT work for BC brain mets, unfortunately. I Still need to ask about Tykerb or Lapatinab…but I think I'll ask the RO about that.
All in all, it was a pretty productive phone convo. She's still a bit cool, but, hey that's her culture. I will see her personally some time next month after my first full Taxol cycle.
Sorry for the length of this...but it's still good to type while I can. God only knows how long I'll be able to. I'm already feeling some weakness and numbness on my left side.
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Hi Lita, I stumbled upon your thread while looking at the "active threads". Although I'm very early in my BC journey, your stories, thoughts and inspiration have been invaluable to me and to many others. You put a human face on the monster many of us will eventually face. You are so awesome!.
Just wanted to wish you all the best in your journey. Lots of prayers going up on your behalf, and for others in tough situations.
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Who's that, sporting a temporary spiked hair do? Rads tech says it should all fall out in a week or so, might ss well have fun with it while I can.
I'm sitting enjoying the early autumn sunshine at Quarry Lakes with Sofia. Took a little 20 minute walk with "Rollo," my rolling walker, too b4 my lower back started hurting. Doubling down on the CBD tincture tonight.
Hope I can sleep tonight...only slept 2 hrs again last night, sigh.
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Looking good, Lita! Hope you sleep well tonight. Peace to you.
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love your spunk lita!! Would you like any of our phone numbers to chat with someone and vent if/when you reach the point you can't type or read? I would be happy to provide you with mine.
Here is hoping you sleep as soundly and as often as I imagine Sophie does!!
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Sending love and strength to you, Lita.
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Sending love and strength to you, Lita.
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