Pardon me if I sound pissy but I’ve reached my boiling point. Like I’m bent-out-of-shape pissed off. Maybe even a little postal. O.K. postal would be extreme and crazy. I’m ANGRY!
For long time readers, family and close friends you know how badly I’ve fallen through the cracks of health care. I’ve kicked and screamed. I’ve gone to doctors and explicitly said to them, “I think I have CANCER” only for them to DISMISS me. Seriously, dismiss me. I’ve given them a list of symptoms and only to have them negate me.
When I finally got them to listen to me they misdiagnosed me. MISDIAGNOSED ME! That’s right, they misdiagnosed me. I was told last year that I had recurrent ovarian cancer because someone typed up a report and said they could not rule out that it was ovarian cancer. So, I every medical professional slapped the diagnosis of “ovarian cancer” on my forehead.
Last year when they removed that 8 cm mass from my abdomen they sent it off to the pathologists. The pathologists studied it. While they were studying my mass I was at another hospital going through hell…in a coma having my life saved.
This is where the proverbial cancer ball got dropped. Those pathologists determined that I did NOT have ovarian cancer. They concluded that I had some other type of cancer. It’s in their report from April 2007…I READ IT last Friday.
At no time did anyone ever contact me with those results. No one ever called my home or contacted my husband while I was hospitalized. I never received a letter. Nothing. Oh wait, I received a letter from the new CEO of the hospital looking for donations…monetary donations. Bastard.
Someone should have followed up. Someone should have recommended chemotherapy. Someone screwed up.
And those fancy lawyers said I have no case against this hospital? What kind of crack are they smoking is wrong with them?
So I found out on March 31st of THIS year that I have cancer again and what’s today’s date? Oh, it’s June 3rd and have I had any treatment yet??? No. No treatment. I have multiple tumors in my stomach, on my liver and lungs…a well known fact for over TWO MONTHS and I haven’t had any treatment. Not for lack of trying either. It’s because of overworked health care providers who have too many patients.
I have a tumor in my stomach that has DOUBLED in size since March 31st. DOUBLED IN SIZE.
Now if I was a Kennedy I would have started treatment April 5th. Oh yes, I just went there. That’s what really has me pissed.
How come a Senator is diagnosed with Brain Cancer two weeks ago and gets access to the BEST doctors and hospitals in the country??? Because he is a Senator and because he is a KENNEDY? WTF??? He is 76 years old!
I guess young mothers who are 41 years old and have young children don’t count in this country! I’m sorry, I guess I don’t know the right people. I guess I don’t belong to the right “club”.
What is it going to take for me to get the health care I DESERVE??? Do I have to cough up my cancer filled lung on a doctor’s desk??
No, I guess I have to die. When I die and the headlines read, “Three-Time Cancer Fighter Dies, Didn’t Have A Health Care V.I.P Card” someone will pay attention.
In the meantime it’s still June 3rd and I was diagnosed on March 31st. My health care is on hold once again because no one knows what the hell they are doing.
Can I change my name to “Kennedy”?
Is there a doctor in the house?
C’mon.
{ 39 comments… read them below or add one }
ocb 06.03.08 at 1:08 am
..and I wonder how many other women are out there like you going through a similar frustrating experience? Chances are way too many. You have every right to be angry. I would be worried about you if you weren’t angry. Stay angry and kick ass woman.
You are too pretty to be a Kennedy btw
ocbs last blog post..Because we can!
Frankie 06.03.08 at 1:20 am
I know this may sound weird but are you able to go out of state for treatment? Baystate Medical Center here in MA has a great cancer center. My aunt was diagnosed with breast cancer and had surgery to remove the tumors all 12 of them within that month. Chemo and rad followed once she was healed enough. And that was with medicare/masshealth state insurance.
But yeah I have a bed you can use. I sleep on my couch anyway. Just a thought.
stay Strong my dear.
Frankies last blog post..random babble
Dave2 06.03.08 at 1:22 am
It’s not necessarily the name… it’s the money behind the name. If you had a million dollars to spend, they wouldn’t care what your name was.
Dave2s last blog post..Bullet Sunday 83
DaDuck 06.03.08 at 3:47 am
I am being 100% serious when I say this, call the local news stations and the paper. Get someone in the local section to do a story on you and your battle.My hometown paper wanted to do a story on my moving to Sweden……if they will do that, this will certainly get noticed.
DaDucks last blog post..Where’s Zoe?
Chatty 06.03.08 at 5:17 am
I am going to one up Frankie. Boston. Dana Farber Cancer Center. Seriously. Best in the country and they don’t screw up.
diz 06.03.08 at 6:31 am
This is infuriating. Really! I have no faith in doctors and I don’t like feeling like that. And then I hear stories like yours, and - jeez.
DaDuck may have something there. Let the press know how shitty your situation is. You want to fight. You want to get treated. And this hospital never sent you a letter or contacted you/your husband about the fact that you did NOT HAVE ovarian cancer?
dizs last blog post..Cause I’m just a teenage dirtbag, baby
Musing 06.03.08 at 7:29 am
You have every right to be angrier than hell! Keep screaming until you’re heard.
Christine 06.03.08 at 7:51 am
I agree with DaDuck! Call all the news stations! That will get the ball rolling!!! I don’t know why they are waiting so long, for you. I come here everyday, to see if the doctors finally thought it would be nice to treat you…
Christines last blog post..Two new (ok, the only) buttons!
Lisa 06.03.08 at 8:07 am
ocb, Thank GOD there is no family resemblance.
Unfortunately there are far too many people in my shoes.
Frankie, I can go out of state as long as my insurance accepts the hospital but I can’t waste too much more time. Thanks for the offer
Dave2, And Bingo was his name-O. I think the name and the money both have everything to do with his access to care.
Daduck, I don’t think the news is interested in hearing how their beloved cancer center screwed up and how another beloved cancer is taking too long to provide care. Unfortunately they are both revered.
Chatty, Unfortunately we just don’t have the money to travel there.
Diz, It’s frustrating to say the least. I think the problem I’ve had is fragmented care…going to different doctors when others seem incompetent but I’ve always had records send to the new doctors. I’ve repeatedly had to correct the new doctor on my past situation. He just can’t get it straight.
Musing, I’m tired of screaming. I’ve been doing it since 2002. It’s getting old.
Christine, I really don’t think this is one they want to hear. Especially since the two cancer centers are so revered. I’m pissed but I’m tired of fighting.
radioactivegirltori 06.03.08 at 8:21 am
I feel for you. I can imagine how hard this all must be and then to see him on the news getting such quick treatment must feel like a smack in the face. I was thinking about you when I saw him on the news this morning. I’m sorry and I wish there was something I could do to help!
radioactivegirltoris last blog post..No Bon Bons Were Eaten While Writing This Post
Shiny 06.03.08 at 8:32 am
This is similar to the suggestions that you call the news stations — but have you thought about changing this blog post up, adding some more of the facts of your story, and sending it as an op-ed to one of the major papers? You’re certainly not the only one out there going through something like this; I believe that many, many others would feel that your voice would represent them as well.
Shinys last blog post..“List on the 3s:” Top 9 Songs I Never Intended To Like But I Do Anyway
Christine 06.03.08 at 8:32 am
Try anyway…Do those revered cancer centers pay their salaries, directly???
Too bad you aren’t over here in Jersey, because, NJ 101.5, would definitely take interest in your story, and make a huge stink about it. (have you ever listened to them? It is all talk, about everything in NJ, and they can really make alot of noise)
Do you get both Philly and Pocono area news stations? Call them! Or contact the CEO of those big giant cancer centers…Call their board members! Make a big giant stink! Don’t give up!!! Please!!!
I cannot believe that a lawyer doesnt’ see this as a case- they withheld life threatening information. They didn’t provide timely treatment, and they apparently misdiagnosed you, even though they had the right information. I am so angry myself. Uggggghhhh!!!
Christines last blog post..Two new (ok, the only) buttons!
she 06.03.08 at 9:19 am
the health system makes me sooooooooooooo angry! time and again it misdiagnoses, it conducts malpractice . . . grrrr. fighting cancer is something i’m passionate about. my best friend had hers come back for the 2nd reason i listed. argh! i am praying hard for this to work out for you. i don’t know you, but know that i am wishing you well.
shes last blog post..Weekend Update
Miss Britt 06.03.08 at 9:33 am
I’m going to second the news outlet stories. And if you’re too tired to do it yourself, let me know. I’m more than fucking happy to fight on your behalf.
Miss Britts last blog post..Everything I needed to know about life I learned from a Tornado: A Photo Essay
EDW 06.03.08 at 9:58 am
I think you are 100% right…and despite the belovedness of this cancer treatment center (it’s not Temple, is it?) I think you should listen to DaDuck. There is a young reporter out there looking for a story who doesn’t hold the reverence you describe…and also, in this day and age, does anyone side with a hospital over a person? Contact newspapers, radio, tv. Someone wants to tell your story.
EDWs last blog post..It’s delightful, it’s delicious, it’s de-lovely
Karl 06.03.08 at 10:04 am
Love you much, Lisa, but I’m going to third or fourth the suggestion that you contact the media. TV stations, newspapers, CNN, the works. Make a stink. Even if you think they’ll all do nothing, contact them.
Do it. Do it like you’re going to apply for SS disability.
Karls last blog post..Another Meme. I Know I’m Lazy.
Colin Brooks 06.03.08 at 10:40 am
This is getting ridiculous! Why won’t they move ahead? I can’t believe this! I am really sorry you have to go through this Lisa. It makes me so mad that I wish I was there to yell at them. Because that’s all you can do, you see.
I am fuming with you. Hug?
Nina 06.03.08 at 11:52 am
Girl, pack up and come to NYC. It’s more than time. Seriously.
Ninas last blog post..Hell, yeah
Captain Steve 06.03.08 at 12:06 pm
I am going to 12th the calling the media, because ain’t nothing more horrifying to a hospital than bad publicity, especially when they screw up this badly. Seriously, the lawyers said there’s nothing they can do? How is that possible?
Captain Steves last blog post..Sex and the City: The Movie
annie 06.03.08 at 1:30 pm
It’s not just the name, it’s the money. I thought I heard that after 70 years old they don’t usually want to treat cancer, or do chemo is it?
If Kennedy was POOR, the doctors would probably tell him “Well there’s not much we can do, you’ve had a good long life.”
What people don’t realize, I think, is that if you’re not rich and banging down the door to the doctors office, you are just another file in the pile.
annies last blog post..I ‘m Putting My Foot Down
DutchBitch 06.03.08 at 1:43 pm
Ugh… that “royally” suck! I wish I could say it’s different over here but nah…
I hope someone gets their head out of their ass and decided on some fucking treatment for you (pardon the f-ing) and same at the insurance company! Sheesh!
DutchBitchs last blog post..Tuesday Brainwaves…
Tug 06.03.08 at 2:38 pm
Yep, what DaDuck said - and if you don’t think local will care, go national - go to consumerist.com, start with them - this is something that seriously needs to be said…just forward this post as a starter.
((HUGS))
Tugs last blog post..Happy Dance!
HeatherK 06.03.08 at 3:48 pm
holding back a string of expletives. damn. It scares me that I live in the same area and this is as good as the health care gets? Funny thing though, that *is* my name. Could you follow up w/ the Inky reporter who did the article on Andrea Collins-Smith/punkrockmommy? I’m sitting here wishing there was something more I could do. *hugs*
HeatherKs last blog post..Three to remember
Rachel 06.03.08 at 3:59 pm
I don’t know what else to say, other than you have every right to be angry, and my God, that sounds like a nightmare.
I am also fuming with you.
Rachels last blog post..Investigative Reporting. On car doors. And opening them.
Avitable 06.03.08 at 5:36 pm
Changing your last name to Kennedy is probably something the lawyers can do, though!
Avitables last blog post..Things I hate about your blog
kyle 06.03.08 at 7:17 pm
Lisa
I don’t know really how I stumbled across your blog but i have been reading for months now. I might somehow be able to help. I work at Dana Farber- in Boston. I think that the hospital that you are at down there has to be doing something incredibly inappropriate to not treat you when you have asked for treatment. If there is anything you can think of that I can do for you please email me. I will say without any hesitation Dana Farber would never let this happen. I am not a doctor but in administration- I do know some oncologists around the country now by working at Dana. Please, please do not take this treatment and think it’s ok. It’s not ok. Go public- go to the news stations- no matter how revered a place is it doesn’t mean that they are not in the wrong. If I can do anything (I would offer up some place to stay here in mass so you can get another opinion– unfortunately do not have the space- but do know of some cheaper end places to stay by the hospital and might be able to help you out) please let me know.
kyle
Black Belt Mama 06.03.08 at 8:06 pm
Lisa,
Please shoot me an email and tell me the type of cancer you have so I can put my husband on the clinical trial search for you. Free treatment from the best in the industry.
Being from your area, I agree about a news story. Want me to send some emails? Make some calls? I say, call the Philly stations. The louder you are, the more people will know, which means there will be faster action.
Black Belt Mamas last blog post..Of Hockey and Karma
Pajamachick 06.03.08 at 9:04 pm
Seriously, call the local news and call some attorneys about what the other hospital did to you. Is it due to their negligence that you are in the condition that you are today? If the answer is yes then you need to hold them accountable.
Or, you could always figure out who you need to speak to and then call upon the blogging community to fight for you while you get the rest you deserve.
Just an idea and I would love to help you and kick ass while doing it!!!
Pajamachick
Pajamachicks last blog post..Scared…
BlondeBlogger 06.03.08 at 9:46 pm
I agree that using the media would really work. Well, you know that. I’ve heard so many stories where something that should be covered wasn’t, until it got out into the media.
I’m outraged right along with you. It’s just not fair.
Lisa 06.04.08 at 12:12 am
Radioactivegirltori, In retrospect I think my post was an overreaction. I’m frustrated with the state of healthcare in general.
Shiny, You have a great suggestion. I’ve been thinking about it ALL DAY! Now that I’m more level headed I might do that but as luck has it I made some head way on the healthcare front.
It doesn’t change the past though.
Christine, No they don’t. I’m not sure how big of a stink I want to make. It’s a double edge sword because I do want doctors to treat me. If I make it an ugly scene then some doctors may not want to treat me at all. Know what I mean?
I don’t get Pocono stations but I do get Philly stations.
I just can’t talk about lawyers anymore. Apparently I live in a county where it’s hard to try malpractice. It is what it is.
She, If I wasn’t sick I would certainly take on health care advocacy. I just don’t have the energy.
Miss Britt, I’m tired. It seems like I made some head way today so I’m going to save the fight for another day.
EDW, Wow, you are pretty good. Temple was one of the parties involved. Fox Chase was the second party…that dropped the ball and tried to kill me.
Karl, Love you much too…I’m putting the news on hold for now. I’ll explain in a later post.
Colin, Hug. I made some strides. We are moving forward. YAY!
Nina, I’m coming to NYC. I’m just waiting to find out when I have an appointment.
Captain Steve, The lawyers said that the county I live in is challenging and hard to try a case in.
annie, I think it’s both the name and the money. I agree with you 100% on everything.
DutchBitch, Fortunately the proverbial head has been taken out of the proverbial ass. Treatment starts sooner that we all thought!
Tug, I’m holding off on the media today. You’ll see why in my next post.
HeatherK, If you are in Pennsyvania then you know that there is a huge problem with health care and malpractice insurance. We can thank Ed Rendell for that.
Rachel, A nightmare is an understatement.
Avitable, Changing my last name is something I’ve become an expert at after three marriages. It’s actually a joke between my attorney and I.
I even legally changed my last name seven years ago when Dude pissed me off by adding my maiden name to my married name and hyphenating.
Still, this hasn’t helped me gain access to stellar health care but it certainly has confused the folks at Social Security.
Kyle, Thanks so much Kyle! Dana Farber is pretty far from where I live though. I’m waiting for an appointment at Sloane Kettering which is still far but closer than Boston. But I will keep it in mind if Sloane Kettering doesn’t work out. They have an entire department dedicated to gastric/stomach cancers.
BBM, I don’t know the exact name of my cancer. I just know it’s a rare stomach cancer. I have to get the doctor to write it down for me…I couldn’t absorb all the details on Friday. When I get more info on Friday I’ll email it to you. Thanks for your help!
Pajamachick, I’ve done the attorneys already and that got me nowhere.
I’m saving the call to the news for later based on what I found out today.
BB, The media can work wonders but it looks like I’m ok for now. Whew!
Lujza 06.04.08 at 1:58 am
I am so with you on this one!!!
Three months ago I found a lump…okay, so it’s in my rump but it’s still a lump! I’ve had a biopsy done, result….”extracted cells inconclusive of diagnosis”…whatever the hell that means. I’ve now seen a surgeon, he concludes…”large, deep, soft tissue mass”…about the size of an egg now, starting to affect my sciatic, making toilet trips…painful. Okay…so it’s at the bottom of one cheek, kind of at the top of the of my leg, but at the rear….growing. Surgery is (well it’s not even scheduled yet) to be performed in July, if I’m lucky…September most likely…due to cut backs and holiday schedules!
Well firstly my butt cheek could be double the size by then and secondly, they said…”you won’t be able to sit for a week and a half due to the surgery and stitches and…depending on the size of the mass at the time of surgery…it could be longer”.
I don’t care what kind of lump it is…I want it out!! I have three small children! I’m only 41! I have a lump where a lump should not be.
Frustrations all around!
Thinking if you….
Pajamachick 06.04.08 at 12:38 pm
Lisa -
Have you done the attorney route since you have found out all this new information??
Just wondering.
Pajamachick
Pajamachicks last blog post..Tomorrow I am going to the doctor…
Sue 06.04.08 at 4:59 pm
Holy fu… better not say that here.
I ‘discovered’ this site on Stumble Upon. I want to help get the word out. The Kennedy Family has only one thing over you and that is publicity. That’s what you need, for if the professionals in your life are under the public eye, they will behave a LOT better, right? That’s the theory, anyway. Hope it works.
Sues last blog post..So this is what it’s come down to?
Sue 06.04.08 at 5:00 pm
What I meant is, I submitted this entry to SU in the hopes that people who stumble will stumble across it.
Sues last blog post..So this is what it’s come down to?
Rebeckah 06.04.08 at 6:31 pm
Guess what? YOU have to take responsibility for your own health care anymore. YOU have to make sure that you are getting the treatment you need. YOU have to make sure you know all the options. YOU have to ask the doctors the questions. If you want health care any more you have to be proactive….or you get nothing.
The Voice of Experience
(caregiver for 4 relatives)
Lisa 06.04.08 at 8:05 pm
Lujza, That’s outrageous that they would make you wait until September for surgery. It sounds like the cells are probably benign based on what you said or they would bump up your surgery. I would find another hospital if I were you if they are making you wait that long.
Pajamachick, I’ve had it with attorneys protecting this hospital so I’m not putting any more time or energy into it. I’m saving my fight for my own life.
I’ve already approached two attorneys and both denied the case the first time. They just don’t want to touch the case.
Sue, My post was more in anger and I probably should have made that clear. I really didn’t want to create any kind of “buzz”.
I do acknowledge that there is a huge problem in the United States though. That’s my main point. Read Lujza’s comments. She’s just another person falling through the cracks of the health care system.
Although I can’t believe there are cutbacks at any hospital with the medical field being one industry that isn’t hurting.
It’s just frustrating.
Rebeckah, I couldn’t agree with you more. The minute you put everything in the doctor’s hands or his/her STAFF, because the STAFF are the WORST…it’s like committing medical suicide.
I also learned that from experience.
Lor 06.06.08 at 1:12 am
I went through the same thing last year. It took them from Feb. to May to finlay listen to me. At one point they said I was depressed and needed medication.
In Aug. I had both breast removed. Yes doctors can be asses, I know mine were.
Lisa 06.06.08 at 9:11 am
Lor, I’m sorry that you had to deal with doctors telling you that you were depressed instead of listening to the fact that you had the symptoms of cancer. I also went through that as well at one point.
Unfortunately for me doctors ignored what I was saying for almost TWO YEARS before there was physical evidence…like a distended abdomen that was HARD…before I was taken seriously. It took the same thing again this year and me taking the doctors hands in mine and telling him that something was WRONG. Making a doctor look in my eyes and tell him that he MUST do something got some action as well.
Always be you best own advocate.
Dana 08.05.08 at 4:37 am
Every time I run across some yahoo saying that universal healthcare in the U.S. is a bad idea because Canada has “waiting lists,” I want to smack them. Especially when I run across stories like yours–I mean, if your situation isn’t exactly like being on a “waiting list,” I don’t know what is!