CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Maggie- welcome and I'm so sorry you're having to worry and wait. As the others have said, we are all here for you. Keep posting whenever you need to. We like to have a laugh once in awhile, but we all know Crazytown is real. The waiting is the worst. Keeping you in my thoughts, sending a hug, and starting a mojo drip for you now.
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OK, now I'm in Crazytown for the worst time since diagnosis (which was a couple of months before I discovered BCO). Surgery last Tuesday? Went fine. Recovery? Doing okay. Path report? I know it's coming, but I can wait. I have a general idea of what it might hold.
But....I have just received an email from my insurance company: They are going out of business. The insurance company is a co-op--created as part of the ACA. I really liked the idea of going with a company that wasn't one of the big insurers, and they've been very responsive.
Background: DH and I are both freelancers. We make a reasonable living (mortgage paid off, money in retirement accounts and DS's college fund). We're not wealthy, but we're okay, even though my income has taken a hit this year, to say the least. Last fall, we had to switch health plans due to various ACA constraints; our old plan was dissolved. I did a ton of research and ended up with the one plan available to individuals in NY State that included Memorial Sloan Kettering, where I'm being treated. That's not why I chose this plan; I wasn't diagnosed until April. Still, I have felt so fortunate to be treated at this hospital. I have another round of chemo to go, then rads, then, I hope, reconstruction. It's going to be many months, and the health plan ends Dec. 31. And then there's long-term followup--and I'm HER2+ so will be on Herceptin for a long time.
Tomorrow I can call the NY State health insurance hotline, though I'm not sure what they can tell me. Info on the 2016 health plans isn't posted yet. So it is going to be a month, probably, before I know if any health plan available to individuals in the state includes this hospital. I DON'T want to switch hospitals. But I may not have a choice. So. Crazytown.
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Crazy Town. It doesn't have to be just tests.
Trust me, so with you on that question of ACA plans and coverage--husband and i flirting with the cutoff between ACA coverage and Medicaid. Our beloved long-term PCP doesn't accept Medicaid. Don't wanna know what local health-care system does with a breast cancer diagnosis....
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Rainny and QMC- so very sorry you have to deal with those issues. You shouldn't have to worry about cancer and financial/insurance stuff at the same time. You need your energy to fight the beast.
Sending positive thoughts both your ways, Rainny I especially hope the hotline can help tomorrow. I don't want my Crazies to hurt any which way or form.
🎪🎪🎪
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Hi Maggie-
Crazytown is so exhausting, isn't it? First, it's hard that you had to call for the results of your first two tests. And now a callback. Remember, these tests pick up all kinds of things. You are brave to get the scans in the first place.
I know exactly how it feels to be scared like that. Last Friday I was waiting for test results of my "routine" breast MRI - I was out with a friend who has been staying with me and the phone rang and I saw it was the hospital calling- should I take it or not? I think I let it go to voicemail but then called back a few minutes later. It turned out they want a followup MRI because they saw something weird on my pec muscle though they can't say what it is - though I think it is right where I had a biopsy of a fibroadenoma last year. (As I've mentioned before- I have had a call back on nearly every scan since dx and so far despite the stress I've been happy with B9-) I didn't want to talk to my friend about it it because I really don't like to draw people into Crazy Town with me- I find it not helpful. But I have to say, the whole process was so exhausting- from being in the damned tube to waiting 2 days for results and trying to have a the right attitude about the wait and the uncertainty, to acting like everything is normal---- I'm still tired .. and then I worry about that - is some hidden cancer making me tired? (though I did drive 5 hours taking my son to a soccer game and back and crazy traffic on about 5 hours of sleep- so I do have good reason!
Rain-I hope you find new health insurance that works for you. The last thing you need is to have to start again in a new place when you feel so good about where you are. I bet you'll find something that works- maybe MSK will work with you identifying insurance.
So, Sitting at the Crazy Town diner counter, relaxing with no one to smile for, is perfect for me. Mind if I bring the Sunday Times along? If I'm not in a chatty way, it's not because I'm not friendly or that I don't like you- I'm just plain tuckered and so happy to find a place to relax and be myself.
Hugs to all!
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Rainny- on another matter, do you know the Moe Prader books (set in Brooklyn) by Reed Farrel Coleman? I was wondering if you needed something to read while recovering. The first and second in the series were republished in 2008 after the author won some awards for the 3rd. Good chance the library would have.
I have not read them but was just reading a recommendation and thought of you.
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Momwriter- you're a natural for Crazytown! Feels already like you've always been here. Save me the crossword puzzle.
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Maggie: yes, we are here for you. As was suggested, definitely let the doc know that the delays are adding to your worry. Waiting sucks, you should not have to wait any longer than absolutely necessary. And Rain, waiting to figure out the insurance stuff sucks too!
Big HUGS to both of you!
Octogirl
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Maggie,
You've come to the right place as the others have said, we're here for you! Many of us have been through similar stuff together we are strong.Welcome to Crazy Town
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Crazy Town is busy as always!
Momwriter, I can just sit next to you at the counter. We don't have to talk or smile; just be there together.
Rain, Hope you get it all worked out. As if you didn't have enough going on.
Maggie, Welcome. You found the write place!
Katy, I had almost forgotten about the medicinal properties of ice cream..... in spite of the fact that I brought it up here in Crazy Town. Chemo brain sucks!
Ever had one of those days where you volunteer for something, then think "why the heck did I do that"? Sheesh, that is me today. For the past 4 years, the high school band director has scheduled a band competition for the same night has the Homecoming Dance. None of the band kids have ever been to the homecoming dance. The kids practice more hours than the football team, play music every football game, march in the homecoming parade.... but never attend the dance. The kids are really bummed. Well, guess who opened her big mouth and suggested that we have a separate Homecoming Dance on a different night for the band kids???? And guess who also said "We could hold in at my house"? If you guessed "that sounds like a nutso thing that Poppy would say", then you are so right. And I haven't been having any whipped cream on my ice cream. Holy Cow, what did I just do?????
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Poppy, what you just did?
Was be a very nice, thoughtful person. I'm proud of you.
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yes, Poppy that's super generous of you. I can't even imagine why the school would be so unfair to the band kids, scheduling stuff so they are unable to attend the homecoming dance! I hope sone of the other band parents are going to be pitching in a no lending a hand. If I lived near you I'd be glad to pitch in with the cooking!! I love that kind of stuff.
Momwriter,
Sounds like you have been going like a dynamo, soccer driving etc. who wouldn't be tired??? Of course I'd probably be diagnosing myself with driving cancer. And waiting for test results...the worst. Waaaaay back 25 yrs ago when I was triple negative.. They found something during a bone scan and so they scheduled another sort of test some kind of x ray or something. ( I was too freaked out to remember) that still showed the something in my ribs... So they scheduled an MRI.... All of this happened over Christmas sooooo.... Lots of family, house guests etc...and no results just more tests where stuff lit up. I also had bone pain, I really thought I'd go nuts over that holiday... no internet, no Crazy Town and I couldn't say anything to anyone because of work and not saying anything about having cancer. It turned out to be fractures and scars from fractures and I had a bunch of tiny fractures from like opening car doors . I had osteoporosis from chemo bouncing me into chemopause. Waiting for tests is the worst and waiting over the holidays is even worse cause everyone is away except for the ones waiting.
Rain,
I have yet to understand what the hell they're doing with that insurance and our treatments. We got out medical statement from the Writers Guild and each of my herceptin treatments is like a jillion dollars and they once they negotiate the actual bill is of course just a fraction of that, but of course once you've seen the big number... Last year before Inwas diagnosed we got a letter telling us our PCP was going "concierge" which boiled down to paying him something like 300 bucks a month each just for the privilege of having him be our "special" doctor . He was boiling down his patient list and wanted to see less patients. We thought about it, and we loved this guy he was a great caring doctor but paying the extra money just seemed nuts plus there was a deadline. We had to make up our minds. By a said date so there we were searching for a new internist, I kept worrying we wouldn't find someone and something would happen. I hope you get to stay at SKM , my sis in law is being treated there but there are so many world class hospitals in New York that either way you should find someplace great. Keeping fingers crossed that everything works out.
Jack,
Coconut oil and anal waxing?!!!! Omg, I've never heard of that one. I have cooked with coconut oil for years, but I never thought of putting it on me rather than in me!!! You guys have so many interesting twists on the humble coconut.
I spent the weekend working on recipes for the new restaurant....gluten free, dairy free baked spiced mini donuts...
And dark chocolate gluten free shortbread cookies with mandarin orange chocolate icing. And I bought cauliflower, broccolini, peas, and spinach for planting tomorrow.
So, tomorrow back to writing and getting more vegetables. I know I'm forgetting a bunch of you , this is a crazy busy town! See you guys tomorrow
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Let's get this day in CT started right!
((((((((((((((((((((((((hugs))))))))))))))))))))))) for all who need it
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Morning Crazies
Part of me feels that I should just be unplugged, but I've been disciplined about lurking only 2-3 times a day.
Thinking of everyone.
Maggie, welcome, even though we know 'welcome 'is a little backwards here, rest assured you are in the right camp to find generous and warmhearted support. Plus a LOT of laughs and food porn, which is all good medicine.
Rain, Queen , Sula- ugh re the health insurance stories. and Rain I hope you get some clarity when you call the hotline. I actually have a change looming in April 2017 as my cobra will end, so I am stating some research on options soon. Long term maintenance is in my cards with S IV and H2 pos.
Momwriter, stress from 'holding back' fully sharing is definitely depleting. I hope this gets unraveled soon.
Poppy- hosting a homecoming - wow.
Sula- mini donuts! I'm sure we will be adding them to the diner menu.
The diner continues to shape up!
I concur on the myirad benefits of coconut oil
Momcat thanks for keeping up the hugs.
Ok I think I've reached my on vacay time limit for this morning. I hope everyone was able to get some glimpse of the moon last night.
And I think full moons do make people crazy. Confirmed because, my man actually proposed to me yesterday! Yup. the stage iv bone mets situation hasn't damped his crazy spirit ( yes Octo - he is a keeper)
More later my crazies!
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Congratulations, Gaia! I am so happy for you! A Crazy Town wedding!
Thanks for the daily group hug, Mommy!0 -
Gaia- Congratulations!!!!!! So happy for you!
and yes- need to figure out the sharing/not issue. I don't like being treated differently because of BC- and feel our culture is nuts about it and people always bring their feelings to it and mine are enough for me to carry; and then there's pinktober- when's melanomatober or prostatetober? of course there's not because it's all about the breast (and female baldness) - - but at the same time, I don't want to be hiding or repressing. These boards can be like a support group which perhaps is just what I need.
Poppy- that is so kind and generous of you- good mom and community member. not fair Band Kids don't get to go to homecoming- ridiculous. But make sure if you go through with it you get lots of volunteers to help you- delegate.
Sula- you have such a great attitude -can't believe you went through this twice so many years apart. Sometimes it all makes me feel like an old battle-axe. And do you actually bake what you post? it all looks great.
Thanks to all for the warm welcome in Crazytown. Jackbirdie- I'll let you do the crossword- also you might enjoy the fun Europe travel info in the Travel section!
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Gaia... Congratulations!!!! I knew he was a keeper!!
Octogirl0 -
I had a very bad night last night, my Crazies....went to bed at my normal ten pm, slept for two hours, then at about midnight I woke up when the hair started REALLY falling out, not just shedding, and it HURT to lie on it!!! and of course, since magical thinking still applies (after all, the Giants have not mathematically been eliminated) I haven't done a damn thing about it. I feel so stupid and vain that I didn't buzz it three or four days ago...now it is Monday, my hairdresser is closed, I don't own buzzer clippers (what do you call those anyway?) so even though she said to call whenever I am ready for a buzz, I probably won't reach her today. And in any case, I have chemo at one pm, and it is sixty miles away...so I don't really have time. Hairdresser said to call when I am ready. Am I ready? HELL NO. Just crazy.
but there I was, awake in the middle of the night, pulling it out in clumps and crying. and hubby slept right through it (which was ok,actually, I was glad to see him getting rest and didn't wake him).
MJ saved my rear end from totally going down a rabbit hole. Finally at 2:30 am I couldn't stand it any more, put a little tiny bud under my tongue and let it dissolve, and next thing I knew it was 7:30 am. It still hurts but at least I am upright, coffee in bed (yes, hubby is still a keeper even though he says he doesn't think he could bring himself to do the buzzing even if we had time and clippers. Someday when I am in a better mood, gaia, I will tell you about the coffee connection. We had bringing me coffee in bed in the wedding vows. Worth considering :-_)). Anyway, my eyes are red but I feel better. But I am balding. rapidly. I am not happy about it.
I was actually going to go to work for an hour or two this am, before leaving for chemo, but that ain't happening. Guess I am just going to put on the Giants cap and pull up a chair in Crazy Town. Thanks for being there and hugs to all.
Octogirl.
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Octo, don't do the work thing today, chemo is enough for one Crazy town soul and sides, we need you!
Maggie the crazies here. I usually tell folks to have a mani. pedi, facial and such whenever they have a mamo on tap. I suggest we amend that to include major bowl of ice cream topped with huge mountain of whipped cream! the day prior to all testing means no calories for that day!
back from PCD, got my cute little flu shot. She was the doc who saw me in pain last month and suggested the chiro for my back and also gave me pain meds. She was pleased to see me so improved. She seems to be a acupuncture fan so I may consider that if my pain gets any worse.
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Hey Octo, so sorry for your bad night. Yes, hair loss is painful (or was in my case) not just psychologically but physically. It's not like the normal state of affairs where you lose hair painlessly every day--the stuff that ends up in your hairbrush. It does hurt when the follicles release due to chemo. My wig guy told me that when I went to him, sure that I was wearing it wrong and that was causing the intense pain (he'd cut it short when it started falling out, and a day or two later I was in agony)--far worse pain than anything from the cancer. And one of the chemo nurses said yes, they really should do a better job of warning patients this could happen; I gather it doesn't happen to everyone. The good news was that the pain went away after a few days. But yeesh. And yeah, I know what you mean about letting DH sleep.
Insurance: I called the NYS health insurance exchange, the NYS financial services bureau (the folks actually shutting down the insurer), and Sloan Kettering's insurance division. Each said they would take it to a supervisor. In two of the three cases, I think I was the first caller with this specific issue. Everyone is supposed to get back to me. No 2016 plan info available now or probably 'til open enrollment starts in a month. So a month of limbo? We'll see--waiting to hear back. Sula, NY State does not have insurance plans available to professional organizations; they used to.
Poppy, you are doing a good thing with the band dance. These kids will love you forever!
Gaia, congratulations! But your post didn't specify: did you accept the proposal? Hmm???? And when we have that Brooklyn meeting, we can go over insurance options....
Katy, I don't know the Moe Prader books--but thanks! Love book recs.
Queen, sorry you're in the same boat with insurance.
Feeling grim and very, very cranky.
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Octogirl, last night when you couldn't sleep, I grabbed a couple of Sula's doughnuts, made my self small, and perched on the edge of your bed and whispered in your ear about the bud. I am assuming I didn't leave any crumbs....
Maggie welcome, C-town denizens are the very best quality.
Momwriter, you mean they don't have Melanomabruary??? Or Prostatepril????
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Christine- I read the last bit and crying tears of joy for you.
Congratulations- the song above for you
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Octo- so sorry you had to go through all that. Please don't beat yourself up. Hugs ..0
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Thank you Tomboy! I confess, I heard you. I certainly was thinking about donuts, and cookies, and ice cream (with REAL whipped cream on top of course)....although maybe that was after the bud and just before I did fall asleep...but in any case crumbs would be a heck of a lot better than my own hair anyway! :-(
It helps so much to hear that I am not the only one who is finding it painful, thanks so much Rainnyc. I am sorry that insurance crap (and it is crap) along with everything else (don't we all have enough to deal with already) is making you cranky, especially since just telling me that about the pain made me feel a whole lot better! I am not alone in this crazy hurting I am going through over something as seemingly stupid as a little (well ok, as a lot) of hair.
QMC: sorry you are going through this crap too.
momwriter: I definitely will be sitting at the end of the counter, I refuse to smile until I've had at least the third cup of coffee (I guess that is why hubby brings me the first one in bed) and would love to share the Sunday Times with you. Newsprint is comforting.
PTS, glad the apt with doc went well.
Poppy: yes, you are crazy to take on the band dance, but in a totally good way.
Thanks so much to all of you for listening to me rant about hair and for being there. Gabe and I are packing the bags for chemo round two. By this time tomorrow I WILL BE HALF DONE! Will try to concentrate on the good news in this cruddy good news/bad news equasion.
Love to all
Octogirl
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Tomboy- missed you. Thanks for taking care of Octo last night.
And glad you got the takeaway donuts from Sula.
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Poppy- could you/would you be the Crazytown wedding planner? You deserve the honor for your generous spirit with the band. I suppose it's Gaia's choice... Haha. But I bet she doesn't disagree. In sure we will all help out.
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Pop, you have such a noble heart, for making the band kids have an even MORE special dance, awesome. What would be the date of that, maybe Beppy and I will crash it!
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And Sula..,, the good! Again !!!!! Wonderful eye candy. And ear candy !!
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Gaia!! Congratulations - you buried the lead!!!
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Octo: bleep almighty--I swear that oncologists' definitions are at odds with those of their patients. Contemplating a list of "things our oncologists didn't tell us".
Everyone: thank you in re. insurance. Wish there was a loophole for "had just enough medical treatment to interfere with my ability to drum up business". I don't mind being self-employed, but the down side is no sick leave or paid vacation.
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