The Farse of Ovarian Cancer
It’s time for me to stop stressing out over this trip to Disney and over money. After all, didn’t I just post about living now and being at peace? I want both of those things back pronto. Let me just say that in yesterday’s post I wasn’t stating that anyone was angry, I was just stating that if I stepped on anyone’s proverbial toes then I was sorry, truly sorry.
Now I’d like to talk about my doctor’s appointment with the medical oncologist on Tuesday. I don’t want to through a bunch of medical crap at you so I’ll explain in the most basic terms I can because this is really fucked up.
Last year, February 2007, I had a biopsy done of the mass on my abdomen and the type of cells found weren’t the kind typically found with ovarian cancer or recurrent ovarian cancer but the report stated that “it couldn’t be ruled out.” So the doctors slapped the diagnosis “RECURRENT OVARIAN CANCER” on my forehead and insisted that’s what I had.
My family doctor and gynecologist/cousin were two voices of reason who said, “hmm, that doesn’t make sense…” However not being oncologists they told me that I should go to a gynecology oncologist and at no time did any gynecology oncologist tell me that it wasn’t recurrent ovarian cancer.
When I had surgery at…gasp…Fox Chase Cancer Center in Philadelphia…gasp…yes, the place that tried to kill me…they never followed up with a letter, a phone call, nothing. They never suggest chemotherapy, never told me if I actually had recurrent ovarian cancer and basically dropped the ball. DROPPED. THE. BALL.
So, for the past year I’ve been of the thought that I had recurrent ovarian cancer and didn’t need chemotherapy. I’ve thought that every thing is fine because a world renowned cancer center would have contacted me after their board of certified oncologists reviewed my case, right?
Not so much.
Even better is that when I was first diagnosed with ovarian cancer in 2004 the tumor I had was a borderline low malignant potential tumor. That’s a tumor that has the potential to become cancer and in my case was cancer however it took three hospitals to make the diagnosis. I wonder today if any of them had it right because all three opinions were different.
Can you say, “fucked up”?
Better yet? Borderline low malignant potential tumors…rarely ever come back and when they do it’s not in the form of cancer that I had last year NOR is it as aggressive as the kind of cancer I have now.
I knew all of this information before I met with the oncologist on Tuesday and then he confirmed every thing I knew from the research I did. It was a beautiful thing, yet extremely tragic.
The medical oncologist has a theory that I may not have recurrent ovarian cancer at all but something completely different…except, he isn’t sure what it is. It could be colon cancer, gastrointestinal cancer, lung cancer, breast cancer…some kind of aggressive cancer that is spreading to other organs. The remaining questions are: where else is this cancer and just how bad is it?
Right now we have no idea what kind of cancer we are dealing with and won’t know until I have a full body CT scan and a fuckton of blood work. I’ll have to start chemotherapy and after three rounds I’ll have another full body CT scan and another fuckton of blood work to see if there are any changes. Hopefully that will help diagnose what kind of cancer I have to better treat it.
The doctor thinks that I’ve actually had this cancer much longer than any of us think especially based on the size of the tumor found on my abdomen last year which was 4 inches. This is why he wants to start chemotherapy immediately.
When I explained how important it was to take my children to Disney World he completely understood. He said, “Take your babies now while you still can but do it quickly because we need to take care of you fast!”
I have a full body CT Scan scheduled for next Friday. Depending on those results I may have to go through a round of chemotherapy before I go Disney World.
Of course we made our plans for the trip and then found out that our medical coverage changed as of January 1, 2008. We are responsible for the first $3,000 of coverage each year before our insurance pays 100%…we pay 10%, they pay 90%. That $150 co-pay I thought I had for my biopsy last week? OUCH, HURT ME…I got a bill for $294.35.
Live and learn…but fuck it. I’m taking my children to Disney World.
The hospital will have to get in line, take $10 a month until I can pay it off. I’m tired of paying every bill on time, living on nothing while every other asshole went out there and bought a house they couldn’t afford. I live in a tiny little house with three people. That’s just a rant for another time…
Filed under Cancer Sucks |23 Responses to “The Farse of Ovarian Cancer”
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7:21 am on April 17th, 2008
Doctors SUCK. Big ones. Screw the hospital bills. What are they gonna do? Repossess the blood/scans/etc? Fuck’em all. That’s what I’m gonna tell my $10k hospital bill too!
Dawn @ Coming to a Nursery Near You’s last blog post..Something’s brewin?!
7:38 am on April 17th, 2008
Lisa’s last blog post..The Farse of Ovarian Cancer
7:50 am on April 17th, 2008
I wish I could adopt you all and bring you here. My city is really amazing in the healthcare department too. ARGH. This is SO frustrating.
p.s. Watch your mailbox!
Karen Sugarpants’s last blog post..Import
7:53 am on April 17th, 2008
Re-claim the peace you had. Make your appointments and book your trip and go have a great time. All the details about the money and who gets paid what and when can get sorted out later, hopefully by someone other than you. Perhaps a kick-ass malpractice lawyer? No matter what you decide to do on the legal front, focus on getting well, even though you are angry. I know that’s hard to do, but anger isn’t going to help get you well.
Ok I have bugged you enough for one day. Oh but if you want to come up to New York and see the someone at Sloan Kettering, let me know. I’ve got plenty of places for you and your people to crash.
Nina’s last blog post..47
7:55 am on April 17th, 2008
At least your doctor now sounds more competent than previously.
I say enjoy Disney… the hospital can wait for their check… they wait for everyone else… so they can wait for you.
NYCWD’s last blog post..Reading More Than Writing
9:08 am on April 17th, 2008
Go to Disney World and have a fantastic time. You may want to check into this: http://pixiedustinn.com/disabilitiesfaq/GACFAQ.html
It might be helpful if you’re feeling tired or run down at all while you’re at Disney World. (In despite what it says on that page I would STRONGLY suggest getting a doctor’s note.)
Jen’s last blog post..The proper way to handle whining kids
10:58 am on April 17th, 2008
That is totally fucked up. Wow. Just wow.
On a lighter note, I went to a friend’s house this week and got schooled by her son in GH3. I felt very small. LOL
yoshi’s last blog post..Dyscalculia
11:13 am on April 17th, 2008
I’m with everybody else.
Go and have a good time.
J.’s last blog post..Monday Stuff
11:14 am on April 17th, 2008
Just catching up here after a few days away… baby steps. Reclaim your peace. Plan the vaca. The hospital WILL take payments, so that’s not a worry.
Hug your girls.
(My daughter LOVED the bracelet!!)
Tug’s last blog post..I’m baaack!
11:57 am on April 17th, 2008
Went to a healing mass on Saturday and put your name on a petition. I am praying for you. You will get the best medicine when you see the smiles on your girls faces at Disney World! I know what it’s like to be ill, I was diagnosed with Lupus 18 years ago, so try the best you can to laugh and watch nothing but funny shows on TV.
12:05 pm on April 17th, 2008
That is crazy! They still haven’t found out exactly what kind of cancer it is and where? I hate doctors so much sometimes! Have I mentioned I don’t trust them either but there’s no other way…
Thinking of you! xx
Colin Brooks’s last blog post..mondayz tunez #21 :: oh, my body, oh so tired
12:52 pm on April 17th, 2008
Put your bills on the payment plan. I’m still paying on a bill from 6 years ago! Those hospital bill are always gonna be there, we need our “fun” money in the meantime.
annie’s last blog post..F-F-Friday
4:54 pm on April 17th, 2008
Damn, Im completely with you on the people who have bought way out of their means and are now being bailed out. My house is fucking falling apart but my bills are kept up…
geek’s last blog post..Tired and other obvious statements
4:59 pm on April 17th, 2008
sue the hospital that screwed you. My husband is a med-malpractice attorney, and people sue for the LITTLEST things, but this is NOT a little thing, this is something immense and guess what? THEY can pay your med bills, your DW trip, etc. etc. It’s not you being “litigious,” it’s you getting your rightful remedy to a terrible, terrible problem. I never suggest lawsuits,but that was the first thing I thought of when I saw this post.
Checking on you every day and praying for your family.
that girl’s last blog post..and another thing…
6:29 pm on April 17th, 2008
Frankly, for what hospitals charge, I don’t know how they expect people to NOT have a payment plan. Vacation first. Don’t give it a worry for a week.
8:56 pm on April 17th, 2008
Please enjoy Disneyworld. The bills can wait.
10:14 pm on April 17th, 2008
((((Hugs)))) I just came to your blog for the first time, from a link on another. Please know I will be keeping you and your family in my thoughts. I’ve added you to my links, so I can follow your progress as you kick cancer’s ass.
Cindy’s last blog post..The purge
1:44 am on April 18th, 2008
I second just about everything everyone has said so far. If that’s not a righteous lawsuit, then I don’t know what is.
Have a blast at Disney. The rest will all sort itself out.
Karl’s last blog post..Little Boy Blue, Come Blow Your Horn
6:48 am on April 18th, 2008
Nina, Trip is booked. Sloane Kettering is an option we are still considering and we may consider taking you up on a place to crash!
NYCWD, I think he is more competent. I can’t wait for Disney. My bags are partially packed.
Jen, Thank you very much for the link!!!
yoshi, LOL @ GH3…I hate it when a kid kicks my ass.
J., I plan on having a great time!
Tug, I’m so glad she loved the bracelet!!! I’ve got my peace again.
Dimplz, That is so kind of you for putting my name on a petition.
I’m sorry to hear about your lupus. I hope you are doing O.K.
Colin, It may sound crazy but it really makes a lot of sense because it is in so many organs it’s hard to know where it originated from.
annie, I have last years bills on a payment plan so this one will get added to the bunch.
geek, I’m in the same boat with a house falling apart. I have appliances ready to go at any minute and I refuse to stress out over any of it anymore.
that girl, I tried to pursue a malpractice suit but was told I have no grounds.
It was too complicated for the lawyers to handle basically.
Chatty, That’s a very good and valid point. They actually DEMAND all of their money NOW.
Mary, I can’t WAIT until Disney World. I talked about it nonstop at work yesterday.
Cindy, I’m so glad you’re here! Thanks for keeping us in your thoughts and adding me to your links.
Karl, We tried the lawsuit…it was a no-go.
I cannot wait to go to Disney. My suitcase is halfway packed. I’m getting the girls swimsuits this weekend and packing their bags.
I CANNOT WAIT!!!!!!!
9:13 am on April 18th, 2008
Hmm… you know… I’m thinking.
Is it at ALL possible that this news is, kind of, sort of, good news?
I mean, not that cancer is good news.
But is it possible that there is a better chance of beating it now?
Or am I being naive?
10:39 pm on April 18th, 2008
I think I’ll just live in a fantasy bubble until I come back from Disney because after I come back my living hell begins.
9:42 am on April 21st, 2008
argh this makes me so mad I could spit. I cant even talk right now because I’m so mad - ok you know what I mean - write - I cant write or say the words I’m thinking.
So far my own cancer experience seems like it’s the biggest case of _overwhelm_ I’ve ever dealt with. Your story doesn’t make mine seem even one bit better. Crap. This cancer docs not communicating nor interacting with our primary care docs is getting old old old and the number of times it happened is getting me down.
If you don’t have a good time at Disney I’m going to personally come and strangle you. . . which would be hard on my best days but damn it, you deserve to enjoy, ok? And like right now! Do it for me and the other cancer patients are too sick to go. We are so excited for you!
As for the treatment money - lets talk about what the situation is when you get back.
If the frozen pea fund http://frozenpeafund.com can’t help someone get a social media fundraiser off the ground I’ll be really surprised.
Right now we don’t give funds to individuals but we’re a.) developing an emergency grant / loan fund and b.) trying to help others use the net to leverage social connections and people who want to do good - to help us in general and to help individuals like you. And we’ve been pretty decent at that so far
Look at all these people who we could harness to help BEYOND helping you guys have a great time!
PS - asking a part of your team to find a good malpractice lawyer might be a really empowering step to take too.
11:58 pm on April 21st, 2008
I’m over the miscommunication and the fuck ups. Totally over it. I spent a year being angry and a year blogging about it. Those posts have been deleted because I don’t ever want to talk about how angry and how self destructive I was.
We’ve already tried the malpractice route and because it’s so complicated we’ve been turned down twice. No one wants to touch the case.
So my choices are to let it swallow me up whole or keep on marching with my chin up high because the minute I give in my life is done. Trust me, I almost died in October.