STEAM ROOM FOR ANGER
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Mic, you are indeed Stage 4, what the hell's the matter with them?
Are they the ones in denial?
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Who knows anymore, I asked the nurses about it, they didn't seem to think differently. They were happy for me like, I wasn't going to have to be here every month until this medicine decides to take a shit on me, then I am forced to move to something else. Which will bring a new halo of side effects. It's a huge pain in my ass I'm sick of this dance. I want to change the song ! I know you all get it. Just frustrates me. Leave my chart alone. Geeze. ~M~
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Micmel, if you're in Massachusetts insurance will pay for recon no problem. And if insurance isn't your issue, the PS and BS should be totally on board. Think long-term. And if you want to reconstruct, go for it!
That said, I only have one boob. I have a good bra shop, Lady Grace. They fit the bras, and will sew in a pocket for $10 so I can get as nice a bra as anyone else. Then they find me a form that fits the bra. Looking at me you'd never know, though of course I konw if you elbow me in the right boob I won't feel anything. If you can find a really good lingerie store that also does mastectomy they can make you feel better toute suite.
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Venting: husband and I purchased a now non-refundable trip of a lifetime to do a raft trip through the Grand Canyon, coming up in less than two weeks (he's 74, has been hiking, working out, etc all his life). We depart July 9.
We didn't buy trip insurance because we were mistakenly told by our bank that our credit card had trip cancellation/interruption insurance. Total trip cost $5200.
Last week husband went in for a routine checkup and was told by his PCP that he has atrial flutter (he's been asymptomatic, but yes, he does have it, it seems). My husband said he "felt like he fell off a cliff" when he heard that dx because he's been in tip-top health mostly till now. I guess we all know how THAT feels.
His cardiologist ordered a battery of tests and hasn't cleared him for the trip yet-we have to wait till the 5th to even get the test results. He's had an EKG, two ECGs, and a stress test that put him in AFIB for a min at the end; luckily his heart self-corrected--they were going to call in a doctor! He will need an outpatient procedure to shock his heart back into normal rhythm which apparently has great results--90-95% success. Sadly he can't have it before we leave because he has to be on blood thinners for at least three weeks prior to the procedure.
We called our credit card to find out how we might file a claim yesterday and found out that we DON'T have trip cancellation insurance. And it's too late to buy any. We filed a complaint in person at the bank but if it's too dangerous for him to go, then we are out $5200. And I have a husband who's been my rock that now has a heart condition.
Angry, sad, scared, anxious. Feel like I'm sitting in the middle of a minefield with no real safe direction to go.
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Micmel, I'm still new to this but i had no idea one could be restaged as a result of successful treatment (test errors I would understand). I find this shocking as the stage 4 criteria of distant location is pretty clear regardless of only having a few mets in an area. We learn something new everyday.
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Claire~ I would file every complaint possible. Idiots. You just can't believe anything these companies say anymore. Don't give up, keep on whomever told you that you had insurance with your credit card. Dispute the charges, whatever you have to do. Such bullshit!
Mae~ I know I was left scratching my head. In my mind it's stage four and that is exactly what I say I am. Another word was brought up that I have to research now that he said was Oglomestasis, (my spelling leaves a lot to be desired I am sure) in the bone. So I have some things to learn still. I will just continue to fight my rear end off! In my mind even though they removed it from my liver and nodes and my breast, it still had spread, that said my definition is completely stage four. He said he has seen bone mets dry up and disintegrate because of this medicine. I hope that is the case for us all. But trust me I still know what I am. It just annoyed me that they would even bother to restage me, when we know what's going on. It's crazy talk. I just ignore the stages anyway. In my mind I believe once the cancer is in your body, it's there dormant , until the next perfect storm comes along to stir it up again. But that is completely my opinion and I truly wish it wasn't that way. I want a cure to be a cure for us all. Hugs ~M~ Sorry about the double post. My computer was acting up again.
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Claire~ I would file every complaint possible. Idiots. You just can't believe anything these companies say anymore. Don't give up, keep on whomever told you that you had insurance with your credit card. Dispute the charges, whatever you have to do. Such bullshit!
Mae~ I know I was left scratching my head. In my mind it's stage four and that is exactly what I say I am. Another word was brought up that I have to research now that he brought up. Oglomestasis, in the bone. So I have some things to learn still. I will just continue to fight my dear end off! In my mind even though they removed it from my liver and nodes and my breast, it still had spread, that said my definition is completely stage four. He said he has seen bone mets dry up and disintegrate because of this medicine. I hope that is the case for us all. But trust me I still know what I am. It just annoyed me that they would even bother to restage me, when we know what's going on. It's crazy talk. I just ignore he stages anyway. In my mind I believe once the cancer is in your body, it's there dormant , until the next perfect storm comes along to stir it up again. But that is completely my opinion and I truly wish it wasn't that way. I want a cure to be a cure for us all. Hugs ~M~
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Micmel, I was diagnosed as a stage IV oligometastic patient, I call it stage IV lite. Mentally, if might be nice to be considered a lower stage but financially a change like that would ruin me, as I would no longer be able to medically retire and SSI disability would be a battle to get. I agree though, we know what we are and that cancer lurks in dark places waiting to jump back out at us 😡
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Hi all, I wish I could fight the bank, but the best we got was an investigation (ongoing) and a possible promise of the fee we had to pay to get the trip cost reversed from my credit card (doesn't have travel insurance) to my husband's (which we were told did, but now find out we don't).
I know in the great scheme this loss is small potatoes. And I know you won't judge me for bitching about it anyway.
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wow! Now that's what I call a Rant! Get that ish off your chest lady!!! That's what this place is for!
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I absolutely know how you feel. I feel those things. Have said all those things. I am stage four. BOOM. Right out of the gate. Do not pass go do not get that PINK effing ribbon. More like a black ribbon for me. Every day is hard. Everyday that same black cloud is over all of us and I have cried all those same tears. You're not alone. Even though it sure does feel that way. I hate hearing the new normal, I hate one day at all time. But all those things are truthful. It's the only thing we can do. And my mets have come for me. In my back,& my pelvis a few spots found. Oh great. No cure they say. But treatable. I don't know if they have been through the treatments. And onto those Franken boobs. I have one foob. It Is very alone. I am alone even though there are people around me. At the end of the day I am still alone. My kids are 21&20& Sson 16. But what about my sweet DH that I am fighting everyday to love. I don't want another woman who was healthier to take my place. I don't want to be just a memory. I wanted to have that property with the porch that had our names on the chairs that rocked together. After all these years about worrying about raising the kids. Now the time should be coming for us to be togther always. Thanks a lot universe! For F**king up good people's lives. ~M~
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Rizzo-
Don't be sorry for your rant. I know I've had them. This whole cancer scene sucks to be on the diagnosis side. No one truly gets it except those who have had it. With each new ache my mind goes to the darkest possibilities too.
I've had it twice. Thought I licked it the first time, very few problems. Triple negative. Lumpectomy, chemo, rads. The model patient at 32 years old.Good for 7 years and then I found a new primary in the same breast but ER+. Crap. So I did the bilateral mastectomy, hysterectomy and chemo. Then recon, and recon to fix my recon but it didn't work and I had the implants removed. That surgery was in January. 5 months now and I feel better. My chest is a bit wonky but- my quality of life is so much better. If my lack of boobs bothers someone- that is their problem.
SO it's been almost 14 years since my first diagnosis and almost 7 years since my second. Am I scared? I think a part of me always will be. But making the best of what's going on today is what I try to do. I knit. I journal my issues and let it out. I hope you find your way to cope too.
Best wishes to you.
Rant away. There's plenty of us here listening.
-m
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Rizzo, I can't believe that if you produce a doctor's note that they wouldn't refund you. Airlines do that. That's insane if they don't. GL
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i was dx'd Stage 4 right from the get-go after YEARS of mammos right on schedule. I guess it is just my destiny to die from this.
I have no more words. I am done.
But I'm still here, and praying for all of us.
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I just spent another beautiful morning in my office on the phone with the incompetent specialty pharmacy, begging for my chemo pills. It has literally given me a headache. I should be out in the garden. It has been nine days since I first started this particular effort to get my refill. Why can't the pharmacy, insurance company, and doctor's office get it together, do their jobs right, and get me the correct prescription, packaged correctly temperature-controlled, and on time? It's no big deal to them if I have an interruption in my treatment, or if I spend hours of my precious life on phone calls and emails trying to get things done right and on time. I should be spending that time enjoying what's left of my life or doing something for my loved ones. And what will happen to me when I am too ill to do all this coordinating and follow-up? For cause of death, my death certificate will have to read "clerical error" or "staff couldn't be bothered to actually solve a problem".
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Shetland, that's sickening!
Maybe your family can ship them a little vial of your ashes as a reminder, a la "mailmetotheGOP.com" (That site is for sending your ashes to the Capitol because of the 'trumpcare' health crisis. The site encourages people to send in their ashes if they have died as a result of no coverage or crappy, ineffective coverage.)
L
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Shetland~ I am so sorry that you even have to waste one ounce of effort on people. I am sick of everyone! I hope that whomever messed your medicine up suffers a very badly stubbed toe in the middle of the night on the way to the bathroom. (I can't say worse things because I am officially now afraid of karma, after what has happened to me.) and I just can't be mean all the time.
I find my myself spending time on trying to search back into my life before cancer, to figure out what I have done to deserve such shit in my life. Or why I'm being punished, while others get to keep their beautiful hair and shape of their naturally given body in life. Why others get to do whatever it is they want and good people have to go without and suffer just to be alive another year.
I am embarrassingly growing resentful and nasty to anyone who isn't sick. If I hear one thing out of someone's mouth who complains or clearly just does whatever they feel like it. Just sends me off.i hear people complain about how busy they are, at least you're able to be active all day without feeling like you're going to just purely fall over. From exhaustion, and you haven't even done anything yet for the day? I know everyone in my life is exhausted. It's like two sides of a coin, work, sleep, eat, return. My day is spent sleep, gag down tasteless food because I have to take 13 pills everyday ,cry sometimes, deal with a variation of pain/muscle aches from the medicines we are forced to take with no guarantees. My heart goes out to the caretakers. They have both worlds to deal with, I don't know what I would do without mine. I think the worst part for me is knowing that there is something inside of me that is slowly killing me. Or quickly killing me even. Although I'm stable now. I'm scared everyday. The heavy emotional duress that comes along with that, leaves not much room to deal with anyone or anything.That is outside of my family. I just don't even care anymore. If I am honest , sometimes even they annoy me. I think it's not even them. I think it's me. I'm just annoyed and mad and angry at everything. Let face it. ~M~
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Hi,
I have not been on here for a while, failing health and needing to spend as much time with my husband.
Since this is the room to vent...........please allow me to blow my stack.
I went to the pharmacy last week to order my chemo meds (oral). A new pharmacist was there, a nosy bloody woman in her 50's (I would love to call her an old bag, but she is about my age). She kept asking me questions about my dx and prognosis. One answer I gave she said she didn't believe. I don't care if you believe it or not, it is the truth, now does this have anything to do with my prescription? "Oh no, I was just curious."
I was annoyed, but let it go. When I went in to collect my order.............grrrrrrrr so f^#^ing angry just thinking about it. She said she was sorry she didn't believe me, but that I was right. I asked her what changed her mind............."I called your MO and asked her" WTF! WTF! WTF.!
I am so angry, and so disappointed in my MO. What the hell happened to patient confidentiality!! If this was something in relation to my script, fair enough, but this was just someone being nosy. I can't trust my MO anymore. I don't trust myself to even speak to her without losing it, and honestly I dont even want to speak to her again. She has cared for me for over 5 years, I trusted her with my life, and I feel like I have been betrayed. I cannot believe how much this has hurt me.
I have been thinking about this for 3 days now, and instead of calming down, I'm just angrier. I have been thinking about stopping treatment, this has just made it easier. She is one of only 2 MO's within a reasonable distance (the second one is not very experienced). I would have to drive 5 hrs each way to see anyone else.
I'm on a weekly oral chemo, it is supposed to be milder. It is slowing down the progression, but not improving anything. The longer I am on it, the worse the SE's get, I'm in bed with a fever of 103f or more for 3-4 days out of 7. I don't bother going to the hospital anymore, it's the same every week, no infection ever shows up.
Sorry, just ended up rambling on.
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Freya - I just wanted to let you knowI am outraged for you. I was thinking initially what a nosey old bag. But this is now professional incompetence from both the pharmacy and your MO. Good god - I'm fuming for you! The very least is you should complain vigorously and demand and get an apology from both places.
Sending support to you as we don't need extra pressure - our dx is enough to deal with!
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god bless you sweetheart and what an asshole. I would be very angry with that awful pharmacy and switch to another who has respect for your business. Sending hugs ~M~
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Freya, I hate your pharmabitch!
My rant is that while I will be gone for radiation, everything here is going to die. My husband and adult daughter will both be here and yet everything I care about is in serious threat of not making it while I'm gone. Despite writing lists I know there is no list comprehensive enough to communicate see the problem and deal with it before it's a catastrophe!!! Husband will try but has spent his life happily thinking he's the only that works. Uh, no, he's the only one who gets paid to work and gets scheduled coffee breaks. His day has a beginning and end. When he's done for the day, he's done. He sits and puts his feet up. Me? I am on call, an guard and on watch 24/7, having to respond to needs, messes, demands and emergencies as they come up. From the time I get up to just before bed there is an unending parade of tasks that must be completed to keep this place from falling into utter chaos. I live with people who have the idea that if they just put whatever is in their hand down any old where, and walk away, they have dealt with it. Set and leave. Drop and walk. And I walk around behind beating back the chaos.
During the day I try to keep the garden, lawn, chicks, chickens, dog and horses alive. I feed animals and people. I clean poop behind animals. I tend their heat and health needs. I watch for signs of distress. I am a servant and shit shoveller and cook and doctor to humans and critters alike.
And now that I'm going to be gone NO ONE has a clue how to step in and take over for me. No one has a clue and no one is wilingl do it. This makes me realize that I have spent my life as a servant to a house and people and animals and it PISSES ME RIGHT OFF! While some people may feel that being a doormat for their family is the same as loving them, I do not buy into that philosophy and frankly, I feel quite shit on by a family that has never been bothered to pay any attention to what I do for them or the things that matter to me. And that is about to be played out in blazing colour as everything I work for dies and falls apart in my absence.
You want to know a secret? I am scared. Scared that after being gone for 3 short weeks (I will be home one wknd I think) that I won't want to come back to this, and do this. This same life of serving people who don't see or appreciate me. Yes, I DO want to be seen. Yes, I DO want my efforts and care to be appreciated. I am worried that I will come back from radiation, tired and feeling beat, 5 years of Tamoxifen to look forward to, that I will look at the mess and dead plants and ruined garden and I will be done. DONE. That I will get back in my truck, drive off and be over- and- out with this same shit that I've lived forever. There was a time when it was okay. That time is over. This is not okay anymore. I love my people, I love my family, but I do not love serving them, I do not love working endlessly without being seen. I do not love that when I need the support of knowing they've got my back, they don't. It bothers me that I know what matters to both of them and work to keep those things vital and alive. It bothers me that neither of them have bothered to return the favour. It is an insult to my existence and life. I feel really miserable right now. Hope to hell I get over it.
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Are you sure your MO violated HIPAA? That she didn't call your MO office and ask a question that wasn't out of your chart? Maybe she called and they gave her a general answer, and not dig into your chart to give confidential info?
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Artista928, I am very sure, it was definitely not a general question.
runor, my heart breaks for you. YOU don't have to get over anything lovely. You deserve to be noticed and appreciated. You deserve to be loved and cherished. You deserve better than what you are getting. I am so sorry your family are not stepping up.
If you can afford it, I would go away for 6 weeks, 3 for treatment, then another 3 somewhere nice and relaxing to recover. I would also turn my phone off for the last 3 weeks.
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Freya- I would lay the blame on the pharmacist - she played you, she weasled private info out of you, info you had a feeling wasn't at all necessary for her to know and she played your MO. pharmacists do sometimes contact the ordering physician to question prescriptions, for example they might see a potential harmful drug interaction and sometimes provide info to the physician on other drugs being taken by the patient. There are also pharmacists who specialize in Oncology drugs whose opinions are actually important to our treatment. So I can understand there are sometimes reasons an MO might provide info to a pharmacist about a patient's prescription - however - this sounds like a self-important and nosy pharmacist who is trying to develop a collegial in town among the medical professionals. I would complain to the manager and the headquarters of the pharmacy - first about the quiz YOU were given to satisfy her curiosity and then about the unnecessary phone call to your physician that she then boasted about. I would tell the MO you felt that your confidentiality was violated to satisfy someone's curiosity and you would prefer that not to happen again. I am so sorry that this stressful event occurred - you have every reason to be pissed-off.
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Runor, I suggest you print your rant out and have your family READ IT. If they don't get it after reading your rant, then you need to find new homes for the animals. Your family does NOT deserve what they will not help take care of. And I agree with Freya, take SIX weeks off, honey.
My situation is different from yours. I'm Stage 4, not Stage 2, and I've told my people once I'm gone, I will no longer give a s*#t what they do. It won't be my FPA (effin' problem anymore). They can turn the house into a hoarder's paradise or burn it down. I won't be here...but YOU WILL be here for a LONG time. Some changes need to be made NOW or I'm afraid you will lose what is left of your sanity and happiness.
It is time to let some things go if your family refuses to step up and take some responsibility. You're only ONE person. You can't continue to do everything all by yourself. You need to give yourself time to heal. Radiation is no walk in the park. I've had two sessions of rads, and it takes a LOT out of you. You will be fatigued, achy, burnt, etc.
As I wrote earlier, if your family refuses to help with the animals and the rest of the work, you have two choices (well...actually three, but the third one is a last resort). 1) HIRE someone and make the MISTER pay for it. If that option doesn't sit well with him, 2) you can SELL the animals, give them to new homes so you won't have the responsibility of caring for them anymore. 3) You can leave. This is probably something you don't really want to do, but you have to put it out there, and tell them you're serious.
I have had to play the "I'm leaving" card a couple of times in my marriage of 27+ years. I have a lazy slob for a daughter. She refuses to do ANYTHING unless threats are made. Now that I have metastatic cancer, she's gotten maybe 10% better, but that's not very much. My husband is a hoarder, and I have to keep reminding him to go thru his stuff. It especially aggravates me when I can't even eat a meal at my bleepin' kitchen table. [Sometimes I do throw his stuff in the trash, and most of the time he is none the wiser, but I'm getting tired of the added responsibility, too.]
Sorry I can't be a little more optimistic about this, but it is what it is. I hope you can get a handle on this.
Hugs to you.
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Freya, I have no words for your situation.
My health care system has grievance forms. Your system should have some sort of way for reporting this outrage as well. Nothing may come of it, but you SHOULD write something up and turn it in. The "higher-ups" should at least be aware that this has gone on. It is indeed an invasion of your privacy.
When you see your MO again, you should mention it. If she starts squirming and going, "Uh, umm, well....umm," you know she was ethically in the wrong. On the other hand, if she comes clean and says, "The person asked about 'da duh da duh dee,' and I told her for her own edification so it will help her with other patients," then you have your answer.
It's worth noting that a lot of these people who work behind the pharmacy counter are just "techs," or trained clerks, NOT full-fledged pharmacists. (One of my close friends is actually a pharmacy tech at Costco...he gets the pills, etc., and works with the customers, but he certainly is no doctor of pharmacology.) Of course that still doesn't give them the right to ask obnoxious, nosy questions! They should know better, for criminy sakes.
Did you get a look at the person's name tag? Did it specifically say "doctor"? A tech will NOT be well-versed in matters pertaining to Stage 4 metastatic cancer. A pharmaceutical doctor, on the other hand will. The doctor will be fully aware what the pill-form chemo Rx's for cancer can and cannot do, the side effects, and might even know what the average prognoses for certain cancers might be because they had to go to school for years, and not just a few months, like the techs do.
Hope this helps.
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Freya you have every right to be upset...I am pharmacy tech and I work with a "nosy pharmacist"...ish I thought you was talking about her for a moment....you as a patient do not have to explain to the "pharmacist" what your diagnosis is...they are there to fill prescription orders...and make sure there no interactions with your meds..and make sure the doctor or nurse sent over the medication order correctly...and answer "your questions"..If I was you I would report that "pharmacist" to corporate of her pharmacy and her district manager will call and have a word with her...Far as your MO..I would definitely let her/him know that I didn't appreciate that and better not happen again.
I am upset along with you..ppl need to mind they dayum business😎
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I read this and it REALLY pissed me off.
"What If Everything Your Doctor Told You About Breast Cancer Was Wrong?"
www.motherjones.com/politics/.../faulty-research-b...
"When breast cancer becomes lethal, it's usually because it has metastasized, or spread tumors around the body. When the first screening ..."
Yes, there's a lot to be said about mammograms giving women "false positives," and getting them all worked up for nothing, but what about those of us who diligently got our mammograms FOR YEARS, and the damn mammos NEVER detected our invasive cancers? I'm the poster child for that!
I was Dx'd with Stage 4 "occult, amorphic" (hidden, without shape) cancer right from the gate. No bumps, no lumps, no achy breasts.
Nothing.
I only had intractable back pain in my mid and lower spine that kept getting worse and worse. A dye-infused CT scan spotted my cancer, not a mammogram.
Mammograms will always be controversial. We desperately need to find something better. If you choose to "do nothing" for a Stage 0 DCIS, Ductal Carcinoma In Situ, how will you EVER know that it will amount to nothing and stay dormant for years? If you have small children, are you really willing to take that chance? And how are they - the MO's - going to test it to see whether or not it's a "tortoise" and won't grow very fast and eventually kill you, or a "rabbit," one that has already sent out satellite metastatic tumor cells and will indeed eventually kill you?
For those of us who are already Stage 2, 3 or 4, it's a moot point. The horse is already out of the barn.
It's a good article, but it will piss you off.
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Yep, Lita, that article pissed me off.
I support perhaps those with DCIS getting a "let's monitor it yearly and wait and see" option, or simple lumptectomy, if they choose.
But it seems the article discounts those with identifiable invasive cancers who ARE caught early with mammograms, and treatable (for now, and hopefully, indefinitely), which galls me. These people aren't just a "percent" to weigh against the costs. Aren't mammograms for all women over a certain age cheaper than surgery, chemo, and radiation for those diagnosed with advanced cancer later? Maybe the insurance moguls hope those people will be sitting on another insurance company's ledger when that happens down the road.
Lita, is there a blood test or some other kind of test that can detect "occult" cancers? If not, I damn well hope some of all the research money collected for breast cancer is going into that.
Carrie
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