STEAM ROOM FOR ANGER
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Although this is not as bad as many of the issues you ladies are dealing with, I just had to share this, since I was furious when I read it. Had my first mammograms today since diagnosis last year. Here are the findings:
"Probably benign finding. Your exam shows an area that needs to be assessed again in 6 months. If you would, please call to schedule your follow up appointment in 5 months."
ARE YOU KIDDING ME?!?!?!?!?!?! Turns out, according to the tech, everything is normal, but they are looking for new baselines for the lumpectomy breast. Great. Could it be worded better?!?!?! Not to mention that my RO does NOT require every 6 month mammograms. Wonderful. More phone calls to doctors just so they can all be on the same sheet of music. ARGH!!!!!!!!!!!!!
All my best to you all!
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Don't get me wrong, I am very grateful that they got the cancer and that the chemo worked on my lymph nodes so they did not have to come out. But truly, I HATE CANCER. It took so much from me. It took almost a year of my life by time I am done...It took my beautiful long strawberry blonde hair and gave me this awful gray/white crewcut. It left me with a reflection in the mirror that I don't even recognize. My energy level is coming back but I can't shake the feeling that I only have a limited amount of time and I hate that too. I also hate the way everyone continually asks me how I am. I know that they care, but I just want to get past it and I don't want to be reminded every day that I have to deal with this dreaded disease.
Thanks for listening.
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I hate cancer. I had a friend, a good friend from college named Carrie. Over the years we came in and out of each others lives. We reconnected a few years ago and were enjoying talking to each other on the phone (didn't live near each other). Then, she got breast cancer. It was either Stage IIIa or IIIb. She was Her2+ and had to have chemo before surgery, then surgery and radiation. She was alone. Just her and her dog and she had cerebral palsy and walked with canes. She had a tough life. She wasn't close to her family and didn't have their support. She didn't have a job. She had so many trials. We talked quite often and I was a good friend and a support to her. Then I was diagnosed...I think she was almost done with chemo then, but didn't have surgery scheduled yet. I was initially Stage 0. After surgery, I was Stage 1a. Conversations became difficult. I could hear that it was hard for her, being Stage III while I was "only" Stage 1a. It got to a point where I couldn't do it anymore...I felt what I was going through was seen as not a big deal and that in turn would make me feel twinges of guilt. I stepped back from the relationship. The last time I had contact with her was 7/28/14...12 days after my surgery. I thought about her. I thought about sending her a card every now and then or about sending her a message, but I didn't. I didn't know where it would lead. It seemed we were better off not communicating so, I didn't get in touch. I didn't want her to make comparisons and I didn't want either of us to feel bad. I just hoped she was doing well...hoped she was NED...hoped she had a lot of years left. I found out today that she died this week on 3/8/16...6 days before her 50th birthday. She was in my wedding, she was my friend. Cancer robbed me of her twice, first in life and secondly by death. If I had never gotten cancer, I would have continued talking with her and supporting her until the end. If she had not had cancer, she would have been able to support me when I needed it. I know I did the right thing when I stepped back - it was the right thing for both of us - but should I have reached out after a certain period of time? I don't know. Could we have somehow communicated again in a way that didn't leave either of us feeling bad? I'll never know because it's too late. I only hope that she knows I loved her. I hope she didn't resent me. I hope she understood. Maybe she did, maybe she didn't. It sucks. She had such a hard life. She didn't get the chance to be free. I hope now she is finally free. Stupid, stupid cancer. I hate it.
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mel, I am sad that cancer tore you apart. I never thought too much about my 2 friends with stage 3 bc. They both have been NED and being stage 1 doesn't seem to affect our relationship. They know as I do at any time any of us can be stage 4. Keep waiting for a cure.
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Mel sorry, bless you and her.
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Mel, so sorry to hear about your friend. You were there for her while she let you. You shouldn't feel guilty.
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Thanks ladies. It helps to get the feelings out.
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Well here's one for you. Last Oct I renewed my BC plan with Covered CA (the exchange). Apparently around that time someone set my income to 0 and effective Jan 1 I unknowingly had BC Medi-Cal. I had no idea. BC has been paying my claims Jan and Feb and I'm almost done with the total of almost $3K before I get things paid in full.
On 2/28 I go to pay my BC premium and find acct is cancelled! WTF?? After much digging someone made an error so I got bounced out of my BC plan onto this Medi-crap plan. Ever since then it's been daily phone calls, being bounced call here call there, so sorry can't do anything. Medi-crap claims they can't cancel my policy effective back to 3/1, even though it's their mistake- they can't override the state's computer. If they could do this, BC could reinstate me eff 3/1 and I'd be able to carry over what payments I've already made for the year. But noooooooooooo. No can do. And bonus! The hospital where I get my chemo, which I'm in the middle of, doesn't take the Medi-crap they gave me! So not only am I out a lot of money because my policy with BC is starting 4/1 as new and they can't do anything but no chemo for me this month nor the CT scan on my chest to check on the lung nodule found a few months ago on CT scan! The idiots at Medi-crap are telling me to use this to get tx. They don't get that my MO can't just write orders for anywhere. She's only affiliated with the hospital here. You can't give orders to a place you don't have privileges!
I am currently 2 weeks late on my final Taxotere dose. 4/1 is Friday so if I'm lucky the following week I'll get in for the final dose. I'll be oh only 5 weeks late total! Add to it before chemo I was delayed medically! Drains that were supposed to be in for a couple weeks were in for 5,then infected for a total of 5 weeks, then needing iron infusions for a week---so much delay before hand too! I don't know how this will effect the effectiveness of tx when you are so off. I know folks lose a week or two here and there on schedule due to SE but this many weeks, and ending with an insurance fuck up to boot that's not my fault!!
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Artista, your State RepCongressperson has staff to take on stupid stuff like this. Have you called their office and requested their help?
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No. I think time's run out on getting my BC reinstated because Medi-Cal has to let go of me before 3/15 for them to be able to pick me back up. Thanks for the heads up. I had no clue about this. I'll contact the 2 reps offices that came up on Mon and see if I can talk to someone who can help.
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Here's the email I sent to my senator:
Hi,
I'm a stage III cancer patient in middle of chemo.Had BC through the exchange until 3/1 when was wrongfully dropped.My income was accidentally set to 0 and was booted to Medi-Cal.Only way I found out was I went to pay premium for March on 2/28 and saw my Blue Cross (BC) acct cancelled.Had my case escalated at Medi-Cal and Covered CA to no avail. Medi-Cal claims even though it's their fault I lost coverage and mid chemo treatment to boot, they can't cancel my policy with effective date of 3/1. State computer doesn't let them. Blue Cross has said they can back date me effective 3/1 if Medi-Cal cancels me 3/1. I haven't used Medi-Cal because I'm not even qualified for it. It's taken me two weeks of living on the phone to hear this because so many say sorry can't help you.
Please help a stage III cancer patient who could be stage IV rightfully get the BC coverage I should have effective 3/1 so I may get my chemo this month.
I was supposed to have chemo on 3/1. I was supposed to have a CT scan on my chest for a lung nodule that could put me stage IV on 3/7. All this has been cancelled because the facility where I get treatment doesn't take Medi-Cal. They tell me go where they take it. They don't get it. My oncologist can't write chemo orders or any order somewhere where she isn't affiliated with. She doesn't have privileges anywhere but the facility I go to.
As a result, I am currently 2 weeks behind on my chemo treatment. Being processed as urgent care needed has done me no good with Medi-Cal dropping me effective 3/1. I'm to be back on BC 4/1 but that'll be 5 weeks late on chemo treatment! I've also almost paid 3K in deductible and out of pocket costs on my BC plan for Jan and Feb. If Medi-Cal would drop me effective 3/1 before 3/15 then BC could reinstate me on my old account and the 3K I've paid would carry over. As it is starting BC on 4/1, I start over at 0 paid. I'm on SSDI low income so it's a lot of money for me to lose.
Thanks you much! -
Good. Your State Representative should have a local office. Call them. You want the local office to help you. Send it to them too, as well as your State Board of Insuranceand your governor's office.
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Thank you Melissa. I had no idea I could go beyond the craptastic insurance companies involved. At least if they can't fix it for me maybe they will see the unfortunate error for me and do something so someone else needing urgent care isn't bounced like I am.
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Nice job Melissa, girl you are the MAX!
Artista sorry you got screwed by the system. I did it to myself one time. I started in October 2009 to get DH transitioned to HFHP HMO Medicare in Jan 2010. They fouled it up. He went to straight Medicare. Probably intentionally and I didn't know any better. I had it in my head that he should be on the HMO plan. Should have left him on straight Medicare once he was there. Transitioned him. He already met the deductible very fast. But b/c I insisted to the change to the HMO everything went to zero. had to meet the deductible again. My head wasn't working right. I was right at the beginning, but the foul ups caused a computation malfunction. Two of us with cancer at the same time with him getting worse was 'challenging'. Yeah, that's an understatement. Melissa's advice was nice, very nice! Ring some bells Artista, be as noisy as you can be. Obamacare sucks.
They're three standards of care in this country. Not that they're hasn't always been three standards of care. Either regular insurance, Medicaid, or no insurance. Nothing changed with ACA. Not sure that more people insured means quality. Numbers can't tell us that. History may give us a clue, the present won't. I know, I lost my hospital of 23 years, and two of my practioners--one doc and my counselor
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Sas- If I didn't have Obamacare I'd be one without any insurance and left to the wind. It's not Obamacare for me. It's the dipshit who went into my account and set my salary to 0 and putting me on Medi-crap, and Medi-crap saying they can't fix it in the computer to release me this month so BC can pick me back up like nothing happened. Otherwise, I was doing great, getting great care with the hospital and docs I love. The bonus is Medi-crap selected a plan of theirs that my providers don't take. They take this other plan. So I didn't get to choose, just someone guessed because they hadn't heard from me. Well yeah, because I had no idea that Medi-crap was in the picture until I was unable to pay my BC premium on 2/28! I'm on disability, low income so it's not like I have 3K laying around either to start over at 0. Simply amazing. Insurance companies just don't care, any of them. Obamacare has saved my life because without it I'd be getting 0 care as I don't qualify for regular Medi-Cal here in CA, so I'd have no insurance and would be picking out my tombstone now.
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Artista, I am in no way minimizing your anger (I would be pissed as hell) but how many infusions have you had? My MO dropped my last one, saying they are now finding 4 are as good as 6. I got neuropathy and terrible digestive issues after chemo round 5. I was supposed to have 6 but could only do 5. I was on a different regimen than you are though She said don't worry, you had plenty of chemo.
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Artista, sorry didn't mean to upset you. The point was I worked on transitioning my Greg starting in October b/c I understood insurance foul ups. I kept checking with everyone. They all assured me we had done everything correctly. Then the foul up. No one would own it. They all said we & they had done everything correctly. My foul up was I should have left him there.
What we don't know as consumers what happens behind closed doors that we have no access too. No one owns the mistake. They know we have no power to ask for accountability. You are and expensive patient. Was it easy to hit '0' which changed your status. Was it planned, was it a mistake? It's a failure of the system? Unless there is a whistleblower we won't know.
I do believe in Free Enterprise and Capitalism, but in the USA we have the highest costs for everything medical and subsidize the world.
I do believe in Medicare. HSA. It sets the rules everyone follows. I have watched it function for decades. Now on this side of it for several years.
The turbulence of these last few years with the attempt of ACA to manage healthcare isn't working. Yes, some folks that were never covered before could get coverage. Like you. Great. Then inextricably a zero was entered. Intentional or a mistake? No accountability. You now have to pay another deductible. Intentional or a mistake? Will you live or die b/c of this? I have a letter written someplace for a similar scenario let me see if I can find it. You can modify it to make it work for you.
Now if I can just remember where.
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4 AC and 3 Taxotere. It's not just completing the infusions but this month is nothing--no scans, no rads, nothing. My side effects aren't doing me in so I want the last dose if anything for piece of mind. Who knows really if it's enough chemo or not, that's individual imo outside of stats and our individual #--our bodies are different. I'm behind 2 months at least from before starting chemo due to drains in a long time then infection for 5 weeks then needing iron infusions so while my sx sisters went forth in chemo, I was left 2 months behind. Now that couldn't be controlled, but this insurance shit can and isn't so it's adding an addition month or more to my being behind and effectiveness of tx.
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Can't find the letter. here's a new one.BTW--------there was no 30 day leeway to reinstate insurance which is usual. They cut you off that one day?
Dear(insert name of CEO)
This is the history of this occurrence(insert history--abbreviate to fact)
Let it be known that due to and error of omission either covert or overt on your part, I depended on you to correctly administer my insurance. You did not follow the rules. That has interfered with me receiving my properly time treatments. You are responsible for any untoward outcome of any nature that occurs because of the negligence of your employees. This succeeds unto my estate should your negligence cause my untimely death.
Simply stating you have no idea on how I was entered as a "0" which through me out of your system doesn't make you not responsible. You are the "Respondeat Superior" the Responsible Superior. You are responsible for all your employees actions. You cannot negate that responsibility by putting it off to clerical error. The law doesn't allow it.
A correction forthwith with all past consideration of deductibles be reinstated as to March 1st 2016.
Complaints of the above breach of the law have been sent to the following. (list all)
_____________________
Get it notarized and send a copy to your lawyer.
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LOL, Sounds official ...........had to laugh " This succeeds unto my estate should your negligence cause my untimely death" no idea where I pulled that one from.........but it works, looked it up.
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Sorry Artista, I wasn't trying to be inflammatory, just be on your side and think positive. I know it is awful to not get recommended treatment
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Maybe Wuthering Heights
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I know Italychick...it's all good.
And I can't afford to pay 3K again when my BC is back on 4/1, let alone for a lawyer as well.
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it is so appalling what has happened to you, I have no words. Just hoping everything turns out well for you
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^^^^ Thanks. It's pretty incredible to say the least!
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Artista, so sorry for what you are going through. You wrote, " Medi-crap saying they can't fix it in the computer to release me this month so BC can pick me back up like nothing happened.' This is not true. I just talked to a friend who works in the Medi-cal office. Ask to talk to a supervisor. He/she should be able to remove the error from the state system. I am in California too. I have dealt with Med-cal (not for me personally)....pain in the behind. Some there do not know what they are doing. Not saying it to put anyone down. It is a complex system they have. Had to make a phone call for someone a few years ago as the person did not speak English. It's terrible how you get the run around. Fortunately, I finally got a person who was really helpful and took the time to look into the case and corrected the information for me. I always told my kids that when you don't do your job properly someone will suffer. I have seen it so many times in my line of work. I always have to remind myself people are not #'s. Best wishes and I hope you can get this resolved soon.
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I am talking to my case worker's supervisor. I've spent the past couple hours getting her to understand the issue to basically no avail. BC has said if I can get out of Medi-crap today then they can back date my plan eff 3/1. She's stuck on this can't do anything till 3/31 when I'm slated to be dropped. I've asked this super to see if her boss or boss's boss can help and get the there's nothing we can do. I can't believe how these people even get hired. Not speaking/understanding english well is bad enough but not being able to do anything business is pure bull shit. But what can you do. For the past 2 weeks I have talked to Medi-crap and Covered CA to no avail. Having cancer and being in active tx that is now on hold because of their fock up doesn't mean much. Unreal!
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Unbelievable! Ask to speak to the manager directly. Don't give up. I found that the best time to call was 8:00 am or 4:00 pm here in Sac. I had to make many phone calls until I finally found a kind lady to help me. It makes me wonder about the people whom I talked to prior to getting her as I gave the other people the same informations. Why was she able to help me and not those before her? She took the time to research what was wrong with the case. Again, very sorry.
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I have asked to get the higher ups but no go. She's calling to see what can be done. I'm so out of energy with this 2 weeks of fighting..
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Artista
I have been listening to Cancer Care on podcasts. They are a national nonprofit in New York. They have pro bono attorneys that help with return to work accommodations. Maybe they can help with your insurance issue
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