Life is like a game of cards. The hand you are dealt is determinism; the way you play it is free will. ~Jawaharial Nehru
On Tuesday I spent about five hours on the phone trying to find a doctor who was willing to take me on because I’m a complicated case. There’s a surprise, me, complicated. With the debacle last year there isn’t a doctor in Philadelphia willing to see me. No one wants to step on the world renowned cancer centers toes. No one wants to get involved.
Everyone was willing to look at my MRI results and tell me I need chemotherapy. “Get chemo someplace local.” O.K. and? That was it. No consult, nothing else.
Thank you Pennsylvania, thank you malpractice insurance. Now I’ll probably need to go out of state. Something I just can’t afford to do with the price of gas or hotels. Johns Hopkins is one of the top hospitals in the world if you have ovarian cancer and I’m about two and a half hours away but financially…I just can’t do it.
I finally found some local doctor to see me after I begged, pleaded and cried for an appointment. I know that this hospital isn’t cutting edge in any way and the care is sub par but I’m desperate. How fucking sad is it that I had to beg for a doctor to see me?
Edit: After a late night phone call and a few hours of sleep…
I feel some relief after speaking to my cousin, the doctor. I’m thanking God for him right now because he knows the Philadelphia medical community. He also knows the doctor I’m seeing today…and worked with him at one of the big Philadelphia hospitals in his earlier years.
The doctor I’m seeing today has great “technical skills” according to my cousin…his bedside manner just sucks. That’s fine as long as he listens to me and treats me effectively.
I spoke to my cousin about going to one of the big research hospitals like Johns Hopkins and he said there’s no need to go to one of them unless experimental treatment is necessary. He said, “Lisa, we aren’t there…yet.”
Let’s hope we never get there.
So in nine four hours I’ll hear what this local doctor has to say about my fate but ultimately it’s not in his hands. Ah, I went to bed feeling like the doctor has all the power. Not so much. I have a say in how I get treated.
The Big Guy Upstairs (a.k.a. God) has already determined my fate…
{ 39 comments… read them below or add one }
Divalicious 04.03.08 at 12:11 am
I am here if you need to talk. You also have my email.
Have you tried this place? http://www.cancercenter.com/
xoxo
Divalicious’s last blog post..Helping a friend (updated)
Geeky Tai-Tai 04.03.08 at 12:26 am
Sheesh! I just can’t believe how horrible the healthcare industry has become. It is only about money and covering their asses, when it should be about the human beings needing the best medical care available. I am sad and terribly angry.
Geeky Tai-Tai’s last blog post..Sometimes We Need A Little Help from Friends
Miss Ann Thrope 04.03.08 at 12:41 am
That’s just horrible. I just can’t believe you would be turned away. Jerks.
Miss Ann Thrope’s last blog post..Quick note
Penelope 04.03.08 at 3:31 am
This is frightening! What happened to a Doctor’s Duty of Care? Don’t they take an oath about that?
I’m truly appalled that they can pick and choose who they treat.
Good Luck Lisa! God knows you deserve some!
Penelope’s last blog post..It’ll cost you!
TSM 04.03.08 at 3:44 am
I was struck while reading your post that I, personally, have a very rose-colored view on cancer treatment as a whole. An inaccurate one, obviously.
I think when it hasn’t touched someone we know well enough to have had to watch the course of treatment and the ins and outs of the hospitals, doctors and insurance companies, our view is clouded by television, movies and the belief that our society would never let someone who is suffering from such an awful condition be stuck with sub standard care, or worse, no care at all. I think we like to assume that the community is, at this moment, ralling around those without proper care and making sure they have not only the best treatment (which will most certainly make them all better mmmkay?), but new jammies and slippers and matching kerchiefs.
The reason I would even go there (being that you don’t know me from Adam just yet) is that I believe your journey can be an eye-opening lesson to all of us. I hope that it paints a very real picture of what this is like for you and how we, as outsiders, can be the best support for you, or anyone else we might meet in your circumstance. I hope we are moved to action, and to make a difference so that this fight of yours can be focused on the cells in your body, not the red tape and bureaucrats in the medical field.
Most of all, I just want you to be ok. Whatever that looks like for you. Hugs and prayers, TSM.
PS-Noticed the submit button-have you ever actually applied for that show?
Paula 04.03.08 at 4:02 am
This is scary, unacceptable and why I have been fighting for better healthcare for Americans (my family is uninsured) as my chosen political flag to wave. I’m going to be writing a lot of angry letters to people about you and your story. Hell, I’ll probably even write Oprah. This is so wrong. Hang in there.
Paula’s last blog post..Dear Lisa
Chatty 04.03.08 at 5:22 am
I hope it goes well. You always have a place in New England if you need to go to Boston. I live 45 minutes north and you are welcome to stay here!
Sometimes Saintly Nick 04.03.08 at 5:47 am
I clicked over from Tug’s blog. I offer my support and prayers. Blessings and much shalom to you and yours.
Sometimes Saintly Nick’s last blog post..Medical Stuff Plus
Lisa 04.03.08 at 6:12 am
Divalicious, You have no idea how many people have mentioned that place to me this week. It’s in a really crappy part of Philadelphia but I’m wondering if it’s worth checking out. It’s only about 3 years old so I’m not sure what kind of results they are getting.
Could it be any worse than what I’m NOT getting right now?
Geeky Tai Tai, It’s not like this for everyone. My father had a heart transplant last year…same day as my first surgery…and has received awesome care by one of the top cardiologists in the world. His care has been superb, well coordinated and he’s only complained about teeny minor things.
Good care is out there but it depends on who you know, what kind of insurance and your illness. Ovarian cancer is hopeless in many doctor’s eyes and a heart transplant puts a doctor on the radar.
See the difference?
Miss Ann, In all honesty I was calling them motherfuckers. Not on the phone…after I hung up. Dude was aghast at the language coming from my mouth in between phone calls. It was the worst language ever to come out of my mouth…ever.
I was that pissed.
Penelope, The Hippocratic Oath? Apparently malpractice insurance cost too much in my state to uphold it. Well, that’s just my opinion because I’ve been around the medical block a couple of times. Over the past 11 years my family has lost superb doctors and every time they have left the state it’s been for the same reason…the high cost of malpractice insurance.
TSM, How I wish it was just like a Lifetime Movie. I regret now that I deleted all of the posts from my battle last year because you would have been able to see just how bad it was. It just became to painful to relive.
I’m hoping for a better outcome…so far we aren’t getting off on the right foot.
My husband and I have joked for three years that we so desperately need Extreme Makeover to help us. Our house is a disaster and everything is about to blow up. I can’t even think about it or I’ll need Xanax.
That would make an interesting episode…how the blogging community got together and re-built a house. Could you imagine?
Paula, Health care is a huge issue in this country. I have good insurance and I’m still digging out from medical bills from last year. I haven’t paid off my hospital stay from last year and now I’m looking at a whole new round of bills. Like I said, I have good coverage too.
All kind of rough to look at when you make $10/hr.
Chatty, You are wonderful. Could I play with the dogs too? I luff doggies. They make me sooo happy.
Saintly Nick, Thank you so much.
Danalyn 04.03.08 at 7:59 am
What. The. Fuck?
That’s so fucked up. What the hell is wrong with these doctors? Assholes.
Especially Heather 04.03.08 at 8:12 am
I so get you… I really do. And you don’t even know me.
The cancer maze is a hard one to navigate, both physically with doctors and healthcare, and emotionally with having to deal with our mortality.
I am praying for you. That is all I can say.
-H
Especially Heather’s last blog post..Off the ground?.
Christine 04.03.08 at 8:30 am
Wow! I live in the Philadelphia area, and am in healthcare… I am totally shocked that all those doctors refused care to you. Disappointed, actually. The reason many of us entered healthcare professions, was because we wanted to make people whoe weren’t feeling well, feel better. It is like refusing to feed your hungry child! I am wishing you lots of luck today!
This is my first time on your blog, and I think I am now going to be a daily reader…
FYI I am over in NJ and we do have some pretty good hospitals here…if you need any input, let me know! And, I went to college in Philly- so, I know those hospitals pretty well, too…
Debkitty 04.03.08 at 9:09 am
I stumbled here from somewhere, I think Miss Ann Thorpe…I can’t imagine your struggle. But you seem to have a damn good attitude about it, I hope all works out for you!
Debkitty’s last blog post..Just Another Day!
Ms Batman 04.03.08 at 9:29 am
I don’t even remember how I found you here, and I have nothing to offer other than I am so sorry this is happening, and it sucks and I know there are people all over the internet moving mountains for you. I can not imagine how it feels to stand in your shoes, but your faith seems to be strong, and will get you through when you’re sure nothing else will.
Ms Batman’s last blog post..January 08, 2004
Mattie 04.03.08 at 9:44 am
I have also heard very positive things about the Cancer Treatment Centers of America. (cancercenter.com) I would definitely check it out if it were me.
Don’t let them defeat you emotionally. Kick ass and don’t even bother taking names.
Mattie’s last blog post..Why Blogging Isn’t A Function - It’s A Community
geek 04.03.08 at 10:40 am
Not surprising. I work with Docs and I can say I have no respect for 99% of them. They are the same as cockroaches honestly. Just my opinion and experience.
geek’s last blog post..Testing 123
yoshi 04.03.08 at 12:17 pm
That’s just stupid that they would refuse you. I have to wonder what ever happened to the hippocratic oath. I’m just saddened to hear any doctor would refuse care, but really, it doesn’t surprise me. After working with doctors for a few years while serving in the Navy, I’ve not held much respect for them. A lot of doctors just seem like whiny teenagers with a superiority complex. It saddens me.
You will be taken care of, I have faith in that.
yoshi’s last blog post..Mariners Baseball
ocb 04.03.08 at 12:30 pm
We need to get your cousin some mini eggs…or cheesecake or something. He is really coming through for you and I am so thankful for that.
ocb’s last blog post..Happy Easter, Easter Bunny!
Tug 04.03.08 at 12:36 pm
OMG. In.sane. Have you contacted any media about this whole fiasco yet? I’d be saturating them with this shit.
Tug’s last blog post..Buy me a cup of coffee?*
Heather 04.03.08 at 1:42 pm
Lisa,
Both of my parents are cancer survivors. University of MD Medical Center saved both my dad’s life and his leg which he had been told he’d lose. His cancer was a rare variety. My mom had melanoma. If you do end up there or at Hopkins (I was just in Hopkins in December-awesome hospital) and you need info about the Maryland/Baltimore area, or even some entertainment while you are there email me and even though I don’t know you I’ll help you however I can. I have spent some lonely times in the hospital when it was just too busy or too far for my family or friends to visit.
Heather’s last blog post..Cleaning. Ugh.
Colleen 04.03.08 at 2:21 pm
Lisa,
My prayers are with you and the men and women who will be treating you. Bedside manner isn’t all that it cracks up to be if the skills are not what they need to be. I’d rather had a doctor with mad skills and is a complete ass vs one that is all peaches and cream and can’t diagnose a pimple.
All my best. Colleen
Karl 04.03.08 at 2:51 pm
Total bullshit, that doctors refuse to treat people. Argh. I’d absolutely fly up to help construct a house on “Extreme Makeover.” Course, they might not let me do anything but carry shit around for other workers. I seem to be allergic to tools.
Karl’s last blog post..Lots of Stuff to Mention
annie 04.03.08 at 2:53 pm
No surprise to me about the medical profession. Certainly advancements in treatments have been awesome, but general care has really went downhill in this country, while the prices just go up and the bureaucracy of it is something terrible - the insurance companies and office administrators aften are the ones making the decisions that have to do with actual MEDICAL and patient care.
It’s bullshit.
Some paper pusher gives me shit and I go OFF.
My father and grandfather were doctors, the old-fashioned kind who made house calls and never turned anyone away. Unfortuanately my dad and grandpa are gone. I remember the day when I could mention their names anywhere in town and people shut the Hell up and treated me with respect. *sigh*
annie’s last blog post..For Lisa
Lisa 04.03.08 at 2:56 pm
I am very far away from you, but I can only offer City of Hope. Yes it does mean travel. But they also have The Village, which are aprtments that patients stay at while they are treated and places for motorhomes to hook up. They have patients from all over the world. The entire hospital is dedicated to curing the body and the mind. It’s a Cancer hospital. Check it out. http://www.coh.org
Erin 04.03.08 at 3:05 pm
I’m sure you don’t remember me, but we chatted about how great Gimme Shelter is, live, several years ago. I hope your appointment went well.
B 04.03.08 at 4:33 pm
I’m glad you were able to find a doctor who was able to see it but I can’t believe you had to go through hell to find that doctor. WTF is wrong with America?!
As far as his bed side manners go, perhaps he’ll be hot like Dr. House and that will make up for it? Maybe?
B’s last blog post..Help Out A Blogger
Avitable 04.03.08 at 5:02 pm
I’m glad you’re going to the one with bad bedside manner. Those physicians are usually the best clinicians because they really have sacrificed all social ability for their medical skills.
Avitable’s last blog post..Geek coming through.
Gina 04.03.08 at 5:15 pm
I found out about your diagnosis and this blog today through Dave’s blog. Coming from a family of cancer survivors and cancer victims (my father for one), I am deeply saddened by your recent diagnosis. If there is anything I can do or if you ever need a friend, here I am. Seriously.
Incidentally, I have “stumbled” this post so hopefully you will find much support out there as people read your incredibly well-written and heartfelt post.
I will be one of your readers from this day forward.
Gina’s last blog post..Elephants as Artists.
TeamDub 04.03.08 at 5:41 pm
Contact these people, let them know of your financial situation…
http://www.huntsmancancer.org/
Best,
TD
tiger lamb girl 04.03.08 at 7:46 pm
I left a comment on your other post..but am repeating the link I left there, here.
http://www.curenaturalicancro.com/
All is not lost.
Please check out the protocol for treatment on that site (it’s run by an Italian oncologist).
You’re in my prayers.
Here is a link to a case of terminal uterine cervical cancer: http://www.curenaturalicancro.com/terminal-carcinoma-uterine-cervix.html
Be sure to click on ‘read more about this case’ at the bottom of the page — the 2nd page has MRI scans you can look at, along with other patient documents.
tiger lamb girl’s last blog post..Head Stuff
basteine 04.03.08 at 9:09 pm
I left a comment on your march 31st post. #181 I believe?? I guess my wife has been lucky, we have no such horror stories on availability or quality of care. Her oncologist has a great bed side manner and made all kinds of treatment available ( newer chemo ). I am not sure how far you live from Harrisburg, I know you said philly area but Andrews and Patel are/were great. Unfortunately, She has progressed to the experimental phase of treatment like i mentioned in my other comment. I have not researched ovarian cancer like I did for colon cancer but there have been several drugs approved for colon cancer in the last couple of years. Hopefully they have a new treatment that will work well for you. I can definitely empathize with the toll treatment takes on your life, my wife was diagnosed in the summer of 2005. It has been quite a roller coaster. Good Luck and God Bless.
Jen 04.03.08 at 9:46 pm
The US healthcare system is un-friggin-believable. I wish you could come up to Canada and be treated here, free of charge.
Lots of prayers, hugs, and positive thoughts!
Jen’s last blog post..For all the bacon fans?
Miss Britt 04.04.08 at 7:17 am
You do not have to respond to my comment - FYI. Did we not discuss this?
Fate sounds really, really, finite. Can we use a different word? Next step - something?
(((HUGS)))
Miss Britt’s last blog post..This is why I don’t get free strollers or trips to Baby Camp
Lisa 04.04.08 at 7:18 am
Danalyn, I wish I knew, really I do.
Heather, I’ve read your blog before and know that you understand. I’m actually sorry that you do understand but grateful at the same time.
ChristineI may contact you privately because the Philadelphia hospitals are the ones I’m having some difficulty with.
Debkiity, Thank you. I’m hoping that what they say is true…attitude is half the battle.
Ms. Batman, I think we’ve crossed paths in the blogosphere before. I’m amazed and blessed by what’s happening on the Internet right now. I’m also incredible humbled.
Mattie, You are the eighth person to now recommend CTCA. I’m wondering if someone is trying to tell me something.
geek, I’m praying I find that 1% who are good. They have to be out there.
yoshi, I think part of the problem is that we put doctors on a pedestal they don’t belong on. But we look to them to save our lives.
ocb, He is wonderful. I wonder what kind of cheesecake he likes??? You bring up a good point…I need to do something nice for him.
Tug, I haven’t called the media. I thought about it…
Heather, There is a possibility I could end up at Johns Hopkins and I’ll be there alone with no family. I may call on all Baltimore Bloggers for help…so thank you for the offer.
Colleen, I’ll take the doctor with mad skills. Thanks for your prayers.
Karl, Allergic to tools? Is that like my allergy to cleaning and laundry?
annie, There is nothing more I can add to your comment other than you are 100% right on spot. You and I have the exact same point of view here. I could do a two week blogging series on this , I swear.
Lisa, I’ve never heard of this but I’m going to check it out. Thank you very much for the link!
Erin, I vaguely remember having that conversation. I can’t wait to see “Shine A Light” and I’m hoping they do it in the movie. Gimme Shelter is my favorite Stones tune. I think I’ll listen to it on the way to work today…
B, Doesn’t everyone dream of having a hottie like House? No such luck here but he is straight forward.
Avitable, I think I’m better off with a realist who has a bad bed side manner than a fru-fru, sunshiny doctor who sucks.
Well they aren’t all that way but that’s been my experience.
Gina, Thank you so much, I’m always happy to have the support of a new reader. I don’t think I’ve ever been “Stumbled” before.
TD, Thank you for the link. I will certainly check it out.
tiger lamb girl, Thank you for the links. I’ll take a look at them and see if they relate to me in any way. I have ovarian cancer which isn’t related to uterine cancer but you never know there may be more info.
basteine, The amount of comments on my March 31st post is wild. I’m about and hour and a half from Harrisburg…I had never thought about heading west from here. I’m sorry to hear about your wife and I pray that the experimental drug work. I know from my volunteering for the American Cancer Society as a Community Advocate that great strides have been made in the area of Colon Cancer. One is the getting screening for people over the age of 50 approved by insurance in the state of Pennsylvania.
I understand the roller coaster you are on so well and when I hear that someone else is on it I don’t feel so alone but I also feel heart broken. I wish you and your wife all the best as well.
Jen, There are times when I wonder what would happen if I was in Canada…
geek 04.04.08 at 8:35 am
They are out there. You just have to find them. I didn’t mean to cast black clouds I’m just personally dismayed with Docs in general.
geek’s last blog post..sigh
Christine 04.05.08 at 12:51 pm
You can email me anytime, do you need it, or can you access it??? I am a PT (physical therapist, by trade, and a mom)
BlondeBlogger 04.05.08 at 9:37 pm
Lisa, I’m about an hour from Baltimore. You have an open invitation to stay at my house for however long you’d need if Hopkins becomes an option you want to consider. I’ll also be happy to drive you back and forth for appointments. I’m serious. It would be a blessing to me to help you in any way I could, so PLEASE don’t hesitate to ask me if you need anything at all.
One of my friends works at Cancer Treatment Centers of America. If you want any information or want to talk to her, just let me know and I’ll connect you two.
BlondeBlogger’s last blog post..Promiscuous Girl
Alex 04.07.08 at 1:11 pm
I’m just swinging by to read, and wanted to let you know that you are in my thoughts and I will continue to send positive vibes your way.
abianne 07.31.08 at 1:02 am
I don’t understand why some doctors turn their backs to some patients. Is treating or helping patients their major responsibility? I think that is what they pledged for.
I am not sorry to hear about your case rather I am quite disappointed about what you had experienced with some doctors.