CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Di2012: don't worry--there's no minimum entrance requirement for entering, or remaining in, CrazyTown. Welcome basket, just for you. Hmm...the standard items are (IIRC) wet wipes, for swabbing at Mysterious Stains that Weren't There Yesterday, an angled mirror to examine spots not otherwise visible, key to your own room at the CrazyTown Inn, triple latte with ativan sprinkles and a kitten. Nice active distracting kitten, who'll pounce on all our invisible air sprites that plague us in the dark and silent hours of the morning. In yours, honey, lemon and Golden Spring (black) tea--short-term rehydration therapy but long-term expectation of celebrating your Golden Anniversary of marriage! (also proper tea pot with strainer in the spout)
Beppy: Other than the infection, cough and being diagnosed with triple-negative metastases....you're feeling pretty good? (amused) It's all relative, I suppose. But I'm sending you a special basket of audio books, maps, bottomless thermos of drinks (your choice), unspillable snacks and prepaid gas card for your road trip.
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Hi all just popping in with a freaky scare.
I woke up with a slight headache and blurred vision.
So I quickly stuffed food in my mouth. Didnt work.
Awh it must be coffee, I need coffee nope.
Ok so I didnt have wine. None hmmm.
So I went for a ride with my better half hes driving towards the ER. Vision was blurred seeing double but only on signs. Weird.
I told him to just take me home no other symptoms.
Slept it off wasted a good portion of my day. Yuk.
I figured occular migraine? Never had one do not know.
Headache was so slight.?
Anyone experience this?
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Di- My goodness! Welcome to Crazytown! I'm so glad you found us. The items in your welcome basket are refillable at no cost at the CT pharmacy, btw. Though the Ativan sprinkles frequently go on backorder. HAHA.
Jan- glad the US was uneventful. I have always thought getting affairs in order a very good thing. Preferably before you really need to, else you will feel it more deeply.
Queen- the prepaid gas card is GENIUS for Slow! That's a lot of driving they will do!
Beppy- holding you close. Always. Looking forward to seeing you for more than a wave as you speed home from your trip! PLEASE never worry about upsetting people or scaring people. I will speak for myself that NOT knowing, and NOT talking are far more likely to create unsustainable chaos in my nabe of Crazytown. Thank you for being who you are, always putting others first. Let us pamper you. Much love, dear Mayor!
Hoping a peaceful, mostly pain and worry free weekend for all. Quiet crazies too!
Here is a lovely blossom from my garden for the porch. It smells really nice
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Funthing- sorry! We X- posted. I don't know if that was a migraine or not. Symptoms certainly sound plausible. I'm all for avoiding the ER if possible. Maybe your body just needed a time out.
Sending hugs and mojo. 👭💞
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Seems like we have some problems going on here.........not gonna tell anyone to "not worry".....because that would b e Stupid.....................just try as hard as you can to remember........this is out of our hands.......I realized that when I decided to go off the Femara, and take my chances.........sometimes it pops in my head each time a new pain occurs, but again I can't do anything about it.....there was no guarantee of no recurrence even if I stayed on the Femara....so I made a choice.....God only knows if it was a mistake......So I decided to try to give you some good news......at least some better news........there is an organization in some cities that is called Go Baby Go............it takes donated Power Wheels from parents whose children have outgrown them, and with "Pool Noodles", and Pipeware........makes them usable for children with disabilitie to make their life a little more enjoyable......this is Grayson's new form of transportation............she still needs a wheelchair to push herself around......but look at this...........to those who know Grayson's story.......for those who don't She has a spinal cord injury from being pulled out feet first in a breech birth....the 2nd of identical twin girls born to my identical twin grandaughter......
Grayson still cannot walk, but at least now she can sit up with a brace and can get up to a sitting position (struggling) from a laying position.....we just pray one day she will walk.......
And yes there is a Malpractice suit against the Dr who thought "a Caesarean section was not necessary....she will need everything handicap assisted for the rest of her life..............and she smiles through it all.........
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Catching up... First (((((Beppy)))) I saw your post in one of the stage lV forums but chose to not intrude figuring you would share with us when you are ready. I am so glad those nodules are out. I will pray for your decisions and conversation with your MO. Jan, in your pocket for Wednesday. I am praying for you. Funthing, it sounds like a classic migraine with aura. My DH gets those and he can't see during the aura. Ducky, I don't think I knew about Grayson. In my world with Wyatt I have seen so many children with sad, unnecessary birth stories. I am sorry your great granddaughter is one. She's certainly a beautiful girl. I remember when Wyatt was little how I searched for ways to let him experience normal life. My dear friends from my encephalitis email group had a saying that our job is to give our children the most normal life as possible. God bless your granddaughter. It's a tough job but highly rewarding. Just remember to tell her that blessings mixed with daily grief and anger are normal. We settled out of court with the two doctors most responsible for Wyatt's condition. It allows us to provide better for him without us going broke. Love you all. I will update on myself later.
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(( Beppy )).. We want ( need ) you here..We are upset this has happened to you.. but we want to know how you are, and provide any ( humble) support we can. We love you Twinnie.. . Crazy Town is YOUR ( and Tomboy's ) Baby, and it definately, definately wouldn't be the same here without you sharing.
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Funthing: glad it cleared up, whatever it was! It sounds like you did everything right: food/snack, caffeine, head for the ER
Dunno how typical I am in this regard, but I do get ocular migraines, or what DH calls "migraines for the Very Distractable" (aura, and visual disturbances, without the crushing pain) and they're very upsetting if you have no idea what's happening to you. One of the hallmarks for those is the "scotoma" or "scintillating scotoma"; sometimes it has a sparkling movement, but always a piece missing from the visual field of one or both eyes.
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Hi ladies thanks for the support.
Absolutely beautiful pics. Off to New York. I need to live a little hanging out in my shell. I have to hear some live music or something . I really am afraid of everything. Must chill. Its hard living with the cancer in my axilla I so want it out even though Oncs want to shrink with meds.
This forum is like having a nice large family
Thank peace and hugs to all.0 -
Beppy,
Thank you for sharing your news. My fear of recurrence/mets does not mean I'm afraid of people who have progressed or were that way from the get go. In fact, I believe that we are all in this together. You have been so giving and still are even in your own time of disappointment and fear. I expect you will continue to be who you so wonderfully are as long as you can as we all will.
A few things come to mind.this week's New York Times had a long article from the perspective of an Alzheimer's patient- her main goal being that she did not want to become irrelevant just because she had this diagnosis- she was changed but still alive and using strategies to cope with her situation and is loving life even as she is sad for her losses. I always follow and enjoy Ann Silberman's blog Breast Cancer- But Doctor I hate Pink who also I think fights the stigma she sometimes feels people assign to her. SHe's funny and uplifting and very honest.
I am so sad about your news. But I"m so happy you and your husband are doing things together you've been longing to do. That's living and that's what you're doing the best you can do. As are we all.
xoxo
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Beppy,
Thank you for sharing your news. My fear of recurrence/mets does not mean I'm afraid of people who have progressed or were that way from the get go. In fact, I believe that we are all in this together. You have been so giving and still are even in your own time of disappointment and fear. I expect you will continue to be who you so wonderfully are as long as you can as we all will.
A few things come to mind.this week's New York Times had a long article from the perspective of an Alzheimer's patient- her main goal being that she did not want to become irrelevant just because she had this diagnosis- she was changed but still alive and using strategies to cope with her situation and is loving life even as she is sad for her losses. I always follow and enjoy Ann Silberman's blog Breast Cancer- But Doctor I hate Pink who also I think fights the stigma she sometimes feels people assign to her. SHe's funny and uplifting and very honest.
I am so sad about your news. But I"m so happy you and your husband are doing things together you've been longing to do. That's living and that's what you're doing the best you can do. As are we all.
xoxo
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Finally home for the first time since Tues. afternoon. Brought my friend J. home from the hospital to Minooka yesterday--between talking and my going online via my iPad (no wi-fi, had to use cellular bec. I don’t remember my BCO pw in order to use her computer), we managed to pass the time despite no TV or radio. Stripped & emptied her drains yesterday--now we both know how. We assumed her neighbor could take over, but she’s getting ready to have the whole extended family (plus J.) over for Greek Easter dinner tomorrow. We also assumed the home health svce would call and send a nurse over today to change dressings and help her shower. Well, the service called and it was a MALE nurse’s aide. (Do they think that just because a woman no longer has breasts, she also has no modesty)? There was no female nurse available, the service was located in the far NW suburbs (Minooka is even further SW of the city) and the guy was pissed off about possibly driving so far. So J. played phone tag with the hospital’s bc nurse-navigator & social svces. and managed to find a service in Joliet (about 20 min. e.) who can send a female RN on Mon.
So J. said she could take it from there (she had no pain and more ROM than she’d expected, and was fine sponge-bathing till Mon., since today was her first shower since pre-op), and let me go home to my cats and more important, my meds. (I had packed only enough till this a.m.). So I headed home--through blinding rain, fog and wind. Standing water on half the streets once I got off the highways. Took 2-1/2 hrs for a normally-90-min. trip. So I’m catching up on mail & posts using a real computer & keyboard, and had fried eggs for dinner. Tomorrow is more of the same raw, rainy cold weather--and I have to go to our rabbi’s retirement party (it’s also a fundraiser). Gonna blow off the Chi. Pen Show near O’Hare tom’w morning--sick of driving, there’s nothing new in the fountain pen world that makes me want to add to my collection and I generally don’t sell or trade. Besides, I don’t want to spend the money--had to buy new compression wear, and it looks like our housekeeper needs dental work that the insurance we bought her doesn’t cover. Will miss my pen-collecting friends from around the country, but maybe I can catch up at the DC Pen Show in Aug. and visit my sis & niece at the same time.
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Does anyone know if chemo can trigger an autoimmune disorder? I'm working on a new theory that chemo triggered some kind of autoimmune response and that is why I have so much pain in my hands, feet, knees, and back even after being off Tamoxifen for 6 weeks now. I could be totally wrong but I'm going to ask my MO about it.
Anyone ever heard of this or read any articles on this possibility
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I would think the opposite would be true, as chemo impairs immune response whereas autoimmune diseases (including allergies) are an immune system gone into overdrive. Did you get Neulasta or neupogen with your chemo? Perhaps your bone marrow hyperreacted to it.
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I did get Neulasta but the last one was 11 months ago. It did cause severe bone pain in my low back but that went away.
Maybe it was the Tamoxifen x 4 months that triggered something or maybe my estrogen levels in 'never-never land' are to blame.
Whatever it is I'm so tired of daily pain.
I can't take NSAIDS, which would probably help immensely, because I had gastric bypass surgery so the treatment that is most likely to help is off the table.
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Take Clarartin 24 hrs prior to the neulasta. Helps with the pain.
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I'm long done with Neulasta. I am 10 months PFC but I have residual joint pain that I'm trying to understand and resolve. Sorry if I wasn't clear on my whole story
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Bekah- I am so sorry about the pain. I think a possibility is chemo pushed you, or rather shoved you, abruptly into menopause. Joint pain in the lower extremities are particularly prone
Also, I think it takes a LONG time for Tamoxifen and its effect to leave the body. I know it's half life, and six weeks should be enough, but i have several, (anecdotal) lingering effects.
I would talk to your docs Wouldn't hurt. Also maybe try some gentle chair yoga just to loosen up slowly in the morning.
The sad thing is, life has changed. Forever. The struggle for me is keeping the courage up to continue. Andto work with this new palette of shitty colors.
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Sorry I didnt catch your whole story. I hope you find resolution.
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Beppy, Did you hear your doorbell? I left a little May Day basket filled with flowers and good wishes, rang the bell, and hid in the bushes. I used to do this as a young child. I don't know if that was just a custom in my neighborhood, or more widespread. Love you, kiddo! Jan
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Jan69 we used to do the same thing.
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Fun.......I get those the eye problems too......yest it is scary...first time my SIL thought it was a stroke....but here is the thing.
The ocular headache is very similar to what happens when you get a torn retina..........only difference is you see a lot of what looks like floaters actually in your line of vision like a veil............but it too starts out like a migraine..flashing partial loss of vision....etc..........so be very careful with those.......eventually with the migraine of the eye your vision returns and the flashing stops........
With a torn retina it continues......so just a word of warning.......I get both so I have to watch carefully and decide which I think it is..........torn retina means "get to an eye Dr or a hospital immediately..........the ocular migraine will go away eventually.......just saying.0 -
Also I don't usually get the headache....slight pressure maybe, but not a pounding headache......so everyone is different........but they are really scary especailly the first one you get.......
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I also have bouts of Ocular Migraine.... without a headache...! Just flashing zig-zag bright lights...and can only see about 1/2 of what I am looking at! Lasts about 1/2 hour...
Driving home from the mountains a few months ago, I saw a double center line going down the road.... Lasted again for about 1/2 hour.... then it goes away.... I've had eyes checked, and they KNOW about Ocular migraines, but don't do anything about it.
Also if you get "cob-webs" in front of your eyes, they worry about that being a detached retina.... Run to the Doc's with that vision problem. I had it only temporarily one-time.... From painting something white, outdoors in the sun.... Take care of those eyes!
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Thank you again all. Good advice this was my very first time with this. I thought it might be a side effect from the Ibrance.
Ive been good all weekend so far. Like you said I was afraid it might be a stroke .
So many worries when you have a BC than you add all the other regular ds. we can have happen wow the stress.
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Funthing, good point that it could be a side effect of the medication. I have had visual migraines, but mine have manifested as silvery areas that blocked my vision, or colored but transparent spots, like someone holding up a piece of colored cellophane in from of me. It seems like there is a wide range of experiences for visual auras.
Beppy, I agree with you about not putting off doing things. I would encourage anyone I know, cancer patient or not, to do the things they want to do, if they have the money for it.
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Hi Funthing,
I experienced my first ocular migraine almost 30 yrs ago. I don't get them often and there is usually no headache associated with them. Just the zig zag black and gray/silver flashing or pulsating lights that last 20 - 30 minutes just like Chevyboy and Duckyb1 described. The first time was scary and I made an appt with an opthamalogist immediately. I was satisified with his diagnoses and wasn't fearful of them after that. I haven't had one in years and then just last week I got one and I did wonder if there was any connection to the medications (ibrance or letrozole). But since I have had them well before the breast cancer diagnosis I'm thinking they are not related and more just due to stress and too much reading off a computer screen.
Cathy
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I can classify them as annoying......if you feel nothing is wrong, and many times it isn't, it's a PITA trying to see something with this shiny, zig zag line, etc.....everyone describes it a little different something sitting there in front of your vision, and you can't get rid of it......
When it happened to me the first time it was a torn Retina....a small tear so they could not find it at the ER of Wills Eye Hospital in Philly.............they told me.."go home, and gave me a pamphlet that said "if any of these things happen go immediately to the hospital".........well "newsflash"......I'm walking out the door with this pamphlet in hand, and I have every symptom your telling me to "come back" for.......LOL
The next day I went to work, still with this same flashing, and veil/cobweb type crap in my line of vision.....a 74 year old woman at work said "you better get to the ER"..I said "I spent 1 hour there last night".......she gave me the name of a Dr at Wills Eye and said "call his office right now"......I did, they said to come right in............I did, and they took me right away, and her Dr who found her torn Retina saw me.................after looking for 10 minutes.......he finally found the tear........................I had laser surgery right then and there, and he said "this will probably happen again, and if it does come here immediately.............it never happened again, but the "optical migraines", when they do happen scare you because your not sure if it is another tear, or just the migraine...............the only clue is the veil/cobweb" like thing you see in front of your eye.............I was told that is the vitreous fluid seeping out of your eye (inside), and that means................."get your ass to a Dr right away cause if it continues you will go blind in that eye".
Just another fun part of getting older......LOL..........And so it goes........
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goodness, I so agree with enjoying life and doing all the stuff we want when we are able to do things, never know about changes
Off to skin doc for over due check up
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rleepac - I have had lupus for 20+ years, and chemo actually improved those symptoms for me. I would definitely talk to your MO, but I agree that the joint pain might be from "chemopause" as Katy posted. I, too, have a different kind of joint pain - mostly knees and lower back. I'm taking aromasin - are you on an AI as well?
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