Lita57
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Lita -
I’m sorry to hear your news. Missed the first post in this thread, so I’m wondering if You are a candidate for a targeted brain radiation. Sounds like you have thought of getting rad consult.
WIshing you peace and strength to face whatever you decide.
I remain hopeful.
Jeenee
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how was your dinner?
Paula.
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Lita, thinking of you tonight and praying things are better tomorrow. I also get the metallic AND salty effect from my Tx. Only a handful of foods taste "normal". Throwing a bunch of stuff in the crock pot sounds like a perfect idea. I'm going to try that tomorrow....Hang in there Lita, we are all sending virtual hugs.
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Got a little writing done today....really HARD because of that big blind spot in my left eye. My brother suggested I use an eye patch, but my right eye is really blurry, too, so I can't do that either.
Hope tomorrow is better. I have to go to the bank and transfer an account to our new trust to get it out of limbo. I have to make sure all these loose ends are tied up so my DH doesn't have a mess on his hands.
It was SO cold last night. I had to get up and put on an extra layer of pajamas (don't have a heating blanket, ha ha).
And now daylight savings time is over so it gets dark at 5:30 now. I HATE this time of year. I suspect I have a touch of Seasonal Affective Disorder (SAD), and it makes it even harder to motivate myself even to make a cup of tea, for criminy sakes!
I wasn't like this last year....but then again I didn't have TWENTY brain mets at the time either. And I wasn't doing the draining weekly Taxol infusions. My MO is not that sympathetic. She says the WEEKLY Taxol is much better tolerated than the dose-dense once-every-three-weeks infusions, and I shouldn't be having that much of a problem with it. Well, everybody's different.
Each successive treatment takes more and more of a toll on the body. I guess if I started Taxol first (and not Xeloda), I'd probably handle it differently, but Xeloda has already taken a chunk of my life and strength.
Thank you all for praying for me and keeping me in your good thoughts. I'm praying for you, too.
Some of my friends in REAL LIFE support groups are having a tougher time than me, so I really shouldn't complain. Easier said than done because we all LIVE in our own bodies and have to deal with it. It just seems that my personality is beginning to change....the substitute RO told me that I might experience a new low close to the TWO-MONTH period after whole brain rads because that can indeed happen. I guess that's where I'm at. Not liking it at all.
Well, gotta go try to eat something while the anti-nausea meds are still working.
Hoping for better days ahead for all of us....
L
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lita - I live a few hours away from you - can I bring you a heated blanket, snuggly pyjamas, or some homemade food one day? or does sophie need someone to walk her? say the word, and I am there for you...
sending light and love
xo
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Thanks, annoyingboob. I'll keep that in mind. DH just needs to turn up the damn thermostat b4 we go to bed, that's all
. He's retiring (burning up his sick leave now), and he does pretty well with taking care of Sofia and shopping and stuff.
I'm basically just having a "low point" in my "experience" these days. (I HATE using the word "journey." I did not call a travel agent and sign up for this little "trip to hell.")
I'll get my stride back...I just have to kick myself in the pants and call my palliative care doc. He wants me to start seeing a therapist to get some perspective as things take their inevitable turn with my growing brain mets, etc. Sadly, I'M THE ONE who has to call the Psych Dept at Kaiser. It's winter time, my wbc's are low, and I don't want to have to go out and make any more apps than I absolutely have to. I do go to REAL LIFE support groups, but it's the day to day stuff now that's getting to be an issue. I can FEEL things growing, things slipping away, and I KNOW my time is running out.
Part of me is okay with transitioning, and part of me is not. I feel cheated, gypped, got the bum steer, etc. I was supposed to have at least another year before it got bad, according to the online BC stats. Ha ha ha....THAT'S WHY THEY TELL YOU NEVER TO LOOK AT THE STATS!!! Most people will end up living longer than they think they will, especially if you only have bone mets, or only one organ is impacted - but that's not the case when you have BRAIN METS, and leptomeningeal involvement, unfortunately.
Thanks again,
L
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Lita -
Early on I talked to my aunt over the phone to deal with the shock panic and trauma. She's a pastor and healer and this was my therapy to adjust to this craphole we are in. I was surprised at how well it worked to talk over the phone. I've been in one on one in person therapy before but the phone call worked fine. My point is that it's cold, you have blurry vision in one eye and a blind spot in the other, along with a few aches and pains. Working with a therapist is a great idea, but phone or skype can work well. Or they could visit you.
I love to hear that you have been moving about. I am the exercise cheerleader here. But on your terms, at a time you choose. I don't think you need to go somewhere for therapy when you can call and given all you have going on that would be something to consider. I also find it easier to talk about and process this stuff with my animals around.
>Z<
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Lita you are in my daily prayers. 🙏🙏🙏
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Lita, you need to treat yourself to an electric blanket. Turning up the heat is simply not the same as that warmth in your bed, especially at the feet and you can adjust as needed without getting out of bed. Plus it doesn't make the air dry.
I think we all feel cheated, short end of the stick ect. I know I do....Some days I think "Well, I've got a lot more out of life the a lot of people". Other days I feel bitter when I see a friend who lives a life of decadence and debauchary just living it up! It f..... ing stinks. Journey is NOT a good word to describe our "experience", I agree.
Z has a great suggestion about using the phone if you can for some support. I did with my first center and I actually liked not being face to face some days.
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Lita, it just really pisses me off when I read what the MO said to you about Taxol. Everyone reacts differently and how can she expect you to feel good with ALL you are taking and going through. Has she had all of this happen to her?
My dear sweet oncologist has learned when I report some symptom or effect he has not been party to....now he says....What do your ladies say? Because he knows I am active on here and MBC FB
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Oh Lita you are going through so much. I have a psychologist who does phone sessions. I hope you can find one. I had a relationship with mine before bc.
Sending prayers and big hugs your way. Tell DH turn the heat up. Wish I could send you a down comforter and hot tea. Maire
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Lita, I am praying for you as always. Yes, a nice cup of earl grey tea and a down comforter are What you need. I agree with others regarding phone therapy. Sometimes getting dressed and going for a car ride is too much to do. Oh, I agree with you on dst! Too early to be dark!
Hugs and prayers,
Claudia
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Lita I like Zs advice also weather has turned crappy up here in Canada too with two millimetres of hair going outside for a walk is terrible. Sore ears headache etc I don't wanna go outside yuck. There are so many options technologically skype, FaceTime etc. I would like my fuzzy friends with me as well.
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Lita sending you the warmest of hugs and love. You are going though so much.
Again as Z said spill it, actually what you relate is what so many ppl feel and when you share the odious with the good others feel the same. We haven't heard from you, i hope you could get that therapy via phone, you know they keep calling from this specialty and that for Dani to show up, and she is like no I am not going to see all these docs, unless and when I really need them. For people that are dealing with doctors and appointments as a job, showing up all the time and under all circumstances is difficult beyond words.
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Thinking of you Lita! Hope you can enjoy a cozy Sunday afternoon with your family.
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Happy Sunday Lita and Sophia. Hope you are out enjoying some sunshine....
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thinking of you Lita
Z
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Still waiting for dr to sched follow up brain mri.
Having more issues...increased dizziness, headaches, bigger blind spot in left eye. Fatigue worse too.
Wbr was only supposed to buy me 6 to 8 weeks. I guess they were right. These renewed symptoms started a couple of wks ago.
Not happy, but it is what it is
L
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Lita I'm going to send all the good mojo I can muster your way. Thinking of you sleep well
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Praying for you to feel comfort in your body and joy in your heart, Lita. You are a bright light here and we all treasure your warm, lovely spirit.
The Lord bless you and keep you, and give you peace, my friend.
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sometimes things just SUCK! Thinking of you and wanting nothing more for you, than no more pain or worries. What you have been through and are going through, I just want you to be able to rest comfortably and have something finally turn everything around for you. You have been through so much ! Much love ~M~
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Lita, continued prayers for healing, peace, and comfort. You are such a strong woman with a lot of fight in you. Know we are all rooting for you. Sending big hugs to you today
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Hi Lita, I have been catching up with Walking Dead, too. What is it with Zombies? When I hit bottom, I remember I could be a Zombie or a vampire.
Love your humor, love your stories, everyday is a new experience. Wake up, take those meds, cross one thing off your list of things to do and have some fun.
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Thinking of you this morning Lita!!! Sending you hugs and saying prayers for you!
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Lita, oh my dear friend, what can I say. I really hate that you are having more symptoms. Suck, is an understatement. I'm praying for you, hoping that something turns this around for you. I hope you feel the love and warmth from all of us that we are right there by your side. Take one day at a time, and enjoy the moment.
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Lita - thinking of you. praying that the strength to deal with whatever is on the road ahead arrives well before the MRI.
>Z<
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Lita - we are all here with you. Your strength, humor and spunk have bolstered us all. I've said it before - you are a force to be reckoned with. Keep flippin' the bird to Mr. Cancer!
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Sending peace and love your way, Lita.
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Lita sending you a big hug!
Babs
P S you stole my line - it is what it is. My kids hate it but it's so true
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Praying for you always, Lita -- for a lessening of the symptoms you're experiencing, and for a speedy MRI appointment and better news than you might be anticipating. Hugs, Deanna
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