I think I have a problem
Comments
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Sending prayers and good thoughts and cyber hugs that all goes smoothly with rads and that the Avastin keeps you dancing with NED. I hear he's quite a dancer. (Be sure to get some good cream for your skin during rads.)
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Annie, you deserve a hiatus more than just about any of us. You're a camel scraping through the eye of a needle. You simply must find a way to take a break, even if it's just sneaking away for an afternoon of reading a steamy novel in the park or an espresso joint. How about a session in a spa for pampering head to toe? You deserve it.
Judie
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DearAnnie,
i'm glad that you got Dr. Lisa Carey into the loop, consulting with your bs You are in a good situation now! See, you can do it. You can email, phone, use your charm(s) and all the resources you have, to get what you need. You will continue to do so, even if you break with "authority." FAR TOO OFTEN PEOPLE WHO ARE IN AUTHORITY JUST LEARNED HOW TO MANIPULATE/WORK THE SYSTEM WELL. Don't get me wrong, there are wonderful human beings who are also doctors and are close to being angels on earth...but not always.
So Annie, just take it one day, one test, one procedure at a time. Be super good to Annie. Be the perfect mother (to Annie) the one no one on earth ever had. We are all praying for you. I think that you have a wonderful ability to touch the humanity in people and we all so much want for you to regain your health. Stay in our large elephantine circle and when you are tired, feel us all holding you up. I do hope we don't have to travel a lot in the future. That last session in the OR was wall-to-wall elephants and it got kind of crowded in there.
With trunkfuls of healing tricks for your ongoing strength,
femme and the pachyderms
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hi Annie,
Let me echo Femme in saying I'm so glad that Dr. Lisa Carey is consulting with your team. I think that's fantastic.
Hope you can have a restful weekend, and that all goes really well with rads.
Hugs,
Ann
P.S. Yikes about your computer! Hope it's all better.
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Hi Annie , you sure are in my daily prayers. Onward and upward dear sister. I'm glad to here your docs got Dr. Carey involved. Yes , take a break from the "pink" stuff. I love red , how bout you!?
Take care Annie. xxxx Melody
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Annie,Glad to hear you succeeded in your second opinion, and agreement reached. May you finish the radiation by early to mid December without complication, and then have a two week holiday break to rest, possibly go on a trip, or feel up to family with you (provided they do the cooking and you do the resting).All the best to you,Tender
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Hey Annie,
I"ll be at my studio in Paris from late December to mid - January. Wouldn't it be a great thing if we were able to meet up there? Let's try to keep this as a goal. Remember you said a few months ago that you wanted to be in Paris during Christmas time? I remember...
No pressure, if not this trip then another time. It would be so beautiful if we could meet on L'ile St. Louis, both of us with ice cream cones in our hands and snow flakes on our coats. (Maybe you can keep this image as you go through AND GET THROUGH, treatment).
A Paris, a bientot, et a votre sante,
femme
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Dearest all,
Oh, why don't women rule the world? Look at how we treat one another with gentle kindness and great, gentuine concern. No matter what the future holds for me, I'll have had the comfort and warmth of knowing the Elephants on this site -- you know what? This restores my faith in the innate good of humankind (well, ok, of womanhood).
I'm not on the boards too much this week because we're at the mid-semester point, and everyone is struggling with a mountain of essays and mid-term exams. (I just finished reading a student essay that revolved entirely around the student's explanation of why she doesn't like "Babylon Revisited," the story she chose to "analyze." No critical insight into the text itself; no works cited page. ARGGGGH! I had to come here to seek a moment of sanity and solace!)
Femme, I'm definitely going to France in December, and will get my tickets tomorrow when I know the final date of radiation. I might elect to do the PET scan after Christmas so that, if there's bad news, it won't mar the holidays with my children. I think, however, that as tempting as Paris alwasy is, I'll probably fly directly to Nice and then on to Corsica this time arund, in order to spend a max number of days with family. But what about next summer? I prefer Paris in warmer weather anyway.
I hope it's true, by the way, that my doctors conferred with Lisa Carey since I was not involved. Also, I'm still waiting for the pathology report. I guess there 's nothing else to do but radiology at this point since, as the BS pointed out, one cannot do chemo and rads at the same time, and the "problem" is apparently still localized. I think I'm a pretty lucky girl not to (apparently) have distant disease considering that I first noticed this lump one full year ago!
Well, back to intense grading.
Love, love, love,
The Most Gorgeous Camel in the World
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Annie, why did your bs say you can't do chemo & rads at the same time?
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annie you are always in my prayers- i hope that the radiation goes smoothly i had rads and it was fine for me i also had a dbl mast and its been 2 years- i miss my breasts at times but i have had great reconstruction and i love life alot more i guess we have no choice but to adapt
boy does all this cancer stuff put a different perspective on life and priorities
lots of love and sending a GIANT CYBER HUG thru to you
julia
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VickiG, I don't think I've ever heard of anyone doing chemo and radiation at the same time. I would think the chemo would suppress your immune system and make it more likely for you to get an infection if your skin burns from the radiation.
Annie, sounds like you've got a good plan in place. My first tumor was medullary, which rarely travels. My second tumor was IDC! (Both triple-neg, though.) I feel a lot safer now that I no longer have any more "traitorous" breast tissue!
--CindyMN
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Cindy ~ you definitely can have both at once; I had 28 rads while on Taxol. A couple of my chemo buddies had chemo/rads the same time I was going thru it ~ we'd see each other every day at rads & once a wk at chemo. It was VERY fatiguing, though.
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Hi all,
Thanks for your input. I don't know what usual practice is, but my medical team feels that in my case they should not be combined. I don't really know why, although the BS mentioned my high blood pressure (which is somewhat controlled by meds) to my oldest daughter as being a reason not to do chemo again right away. I do hope the rads do their job. I can't wait to feel I have a fighting chance again.
Love,
Fabulous Camel Feet
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Hi all,
Well, the news is not good. I have more lumps in the underarm -- probably tumors. Yet another biopsy tomorrow morning, and then ----------------------- who knows. The BS is talking more surgery, and then perhaps chemo and radiation. I contacted MD Anderson this morning, and they will get back to me within three business days, their service said. Yes, I will go to Houston for treatment, but don't know how I can manage my job and associated health insurance.
Oh God, what is to become of me.
Love,
Annie Armpit Lumps Redux, redux, redux.
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Aw, Annie... I don't think there is anything I can say right now that would help you through this.
Aren't you right in the middle of rads??? What kind of biopsy? Sheesh. I don't even know where to start.
Has anyone thought maybe a contrast MRI might highlight those new areas, if they are really tumors? Heck, I'm just grasping here...I don't know what to say.
This just sux. Really, really big time.
Annie, I wish I could zip over there and hug you. No, that would not be a good idea. If I happened to meet your surgeon, I might end up doing something I would regret. I've heard those Texas prisons can be really nasty.
I've regained most of my strength and energy since chemo, so I'm bunching it up and sending it to you, 'cause you need it more. Here it comes: zzzzzzzzzztttzzzzzzzztttzzzzzzzzttt...
Remember all of us she-elephants ("elephant cows" just doesn't work for me) are there for you to lean on.
Big hugs, Annie...
otter
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Annie, one has to ask just how many times one ball can be dropped. I believe you must be the world-record ball. I also believe you have world-record "balls", if you can tolerated a masculine reference. Keep on fighting one battle at a time. Your powerful sisters are holding you.
Judie
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Oh, dear Lord...
I am praying for you, big-time.
You will manage Houston, I promise you. When did you start at the university you are at now? "I am not a lawyer," but it seems to me you are eligible for the Family Medical Leave Act -- which means that you are entitled to up to 12 weeks of leave to take care of your own serious illness. Even if they don't count your months in North Africa as "working for the university," if you worked there in Laredo the year before, I think you have worked there long enough to be eligible (federal website says you have to have worked for the employer for 12 months, and they don't have to have been consecutive months).
http://www.dol.gov/esa/whd/fmla/
I didn't even know about the FMLA until after I'd been hounded back to work... but I really think you might have more employment/insurance rights and security than you think, even before tenure decision is made.
Of course, in any event you need to get the best medical care... but it may be that it will sit better with your continued employment than you think.
Also, these people may be of help -- a pro bono law project devoted to ensuring the rights of people with cancer: http://www.disabilityrightslegalcenter.org/about/cancerlegalresource.cfm
They now have an intake form online that you can fill out, rather than leave a voicemail.
I am so pissed off to hear about these lumps! I refuse to say "crushed." I was crushed when you got your dx in late February, now I am just really angry that you have been bearing the brunt of this battle without an "up-armored Humvee" if you know what I mean.
Love you -- we MUST win this war, MUST.
Ann
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Dear Annie,
I am really present, Annie. One step at a time, and can you take any thing to calm you? Personally, I always found valium to unclench all my tightness and give me a handle on things.
MD Anderson sounds like the place where you should be. I have a feeling that something at the university could be "adjusted' to allow you to go to Anderson for treatment. I am holding you up (along with all my friends, the other pachyderms).
xoxo femme
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Annie, I'm floored! What incompetence! You've been through too much to have this happen now.
I hope they are removed with minor consequences. {{{{{Hugs}}}}}.
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(otter is still thinking...)
Annie, are you tenured? Maybe this is the time to take advantage of that status. If you claim some leave time under FMLA, you would probably have to take leave without pay, right? What would happen to your health insurance under those circumstances? They have to hold your position open for you, but I don't know about eligibility for health insurance during the leave period.
Is there someone (campus ombudsman? human resources rep?) you could talk to about your leave options?
I had originally planned to post about the surprisingly long distance between where you are, and Houston. I had somehow figured you could dash up there to M.D. Anderson in the afternoon, after giving a couple of morning lectures; or vice-versa--you could take in an early morning onco appointment and run back to work for the afternoon.
Then my dh reminded me we're talking about Texas. I did a Mapquest search and found out how far apart those two cities are. A 5-1/2 hour drive? That will take some planning. But, at least you can get up to M.D. Anderson for a consult and evaluation, yes?
Keep moving forward. You can do this.
Love you...
otter -
Annie,
Came here to check up on how you're doing, and was shocked and saddened to read these last few posts. I don't even know what to say. Lots of good advice here, and nothing you can do but take it one hour/minute/second at a time and keep moving forward.
I have a CD made by one of the ladies here, back from a time when there was a thread chock full of friendship, love and support. Here are some of the words of a country song on that CD by I have no idea who (not a country music fan), but I always play it at least 3 times, and tears of sadness, but also of fight and determination, stream down my face every single time.
I looked it up, it's Rodney Atkins...
Well you know those times
When you feel like there's a sign there on your back
Says I don't mind if ya kick me
Seems like everybody has
Things go from bad to worse
You'd think they can't get worse than that
And then they do
You step off the straight and narrow
And you don't know where you are
Use the needle of your compass
To sew up your broken heart
Ask directions from a genie
In a bottle of Jim Beam
And she lies to you
That's when you learn the truth
If you're going through hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there
Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I'd fall right into the trap that they were laying, yeah
But the good news
Is there's angels everywhere out on the street
Holding out a hand to pull you back up on your feet
The one's that you've been dragginig for so long
You're on your knees
You maight as well be praying
Guess what I'm saying
If your going through hell
Keep on going, don't slow down
If you're scared don't show it
You might get out
Before the devil even knows you're there
Yeah, If you're going through hell
Keep on moving, face that fire
Walk right through it
You might get out
Before the devil even knows you're there -
Annie,
I cant' remember... have you had a mastectomy on the breast side that is a issue? Please do go to MDA for consultant. Please do not feel you have to go there for treatment. There is no proof you will get any better treatment there than any where else.(been there - done that.) If your local doctor will treat with the same treatments, why stress of the travel? The place does not heal people...the right treatment does. And you can get that many places in the US.
Holding you tight in prayer.
Flalady
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annie, what can I say about the new lumps, Please go to MDA for a consult and see what they have to say.
Sheila
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{{{{Annie}}}}}}
Wow - I am so sorry - I thought I had the worst care, but your docs do seem to have it beat!
I don't pray much - if there is a God, we don't have that kind of relationship, but KNOW KNOW KNOW that you are in our hearts and thoughts, and that if there is ever anything I can do, I will do it. I don't say that lightly - I show up, so it's a big commitment.
I would be looking into long-term disability - there were 3 (!) people diagnosed here at my company in the same month. One is just returning from 9 months of chemo. He received full pay for 3 months, then tax-free 60% for six months. Health insurance was paid in full.
Hope the consult gives you what you need.
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Annie, Annie, Annie,
You have certainly traveled one of the bumpiest roads I've heard of lately. You are due for some smooth sailing. I hope MDA will at least point you in the right direction. And be totally honest with you about what you're up against.
You can't change where you've been, only where your'e going.
I think there's a book in this story. Have you given thought to writing one?
Anne
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Dearest Annie,As you undergo your biopsy this morning I hope you feel our presence surrounding you. We are all saddened by your news, yet ready to stand by with full support.My thought on your dilemma is perhaps different. I believe much can be done from where you are by sending pathology slides, frozen specimens, digital online copies of PETs, MRI's, CT's from your current doctors to any second opinion institution you choose via overnight courier. A second and or third opinion from a triple negative specialist can similarly be sought by entry into an institutions system online, and then telephone consultation (with you present should you wish).So, given your current radiation therapy treatment, and another surgery, the stress and fatigue which may be present, and your desire to work as much as possible to take off the mental strain and feed the bank account, I might consider bringing the specialists to you via technology, rather than you to them via planes, trains and automobiles.So very much depends now on whether you continue to hold trust in your doctors. Trust to clearly communicate, the bad and the good. If your sense of trust is completely violated, then indeed you best take to the highways and travel to a distant medical facility for this fundamental of medical care.My prayers are with you as always, Annie.Tender
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Tender and FlaLady make good points. If it is possible to get a protocol from MD Anderson and any other places that are dedicated cancer centers of high regard, then have the consults via technology rather than taking to the highways and/or airways. It would be better if you could stay at home and at your teaching job. I think work and the distraction of it, is good at this time.
Sending out healing and strength vibes (and prayers) to you.
femme
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Hi there wife of Mustapha Camel Tail !
I was trying to find more on triple negative beast cancer for my mother and found this topic .
I love your sense of humour and thought you would get perfectly along with my mom !!
I agree with the ladies above : you need to seek further advice from MD Anderson.
Please keep your chin up ,your family loves you and needs you.
By the way, is that your little sister on the picture ???(Certainly cannot be your daughter , you are too young to be a mother). She is the most gorgeous child I have ever seen !
This is a message for your cancer : "NO MORE CAMEL CRAP ! GET OUT OF THAT BEAUTIFUL , YOUNG-LOOKING , HEAD-TURNING BODY ! "
I love you,
nani camel tail
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Can you believe it? That's MY DAUGHTER who wrote the post above! She's the mom of the beautiful little girl I use as my avatar. She found our site!
Love to all,
Annie
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Hahaha! I should have picked up on that, Annie.Of course, Alaindeloin! Can't get more french than that. Welcome. We just LOVE your mom.Beautiful daughter, granddaughter too.Best wishes, ladies.Tender
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