Goatview Farm - The Saint Report www.goatview.com

 

December 8
MD Anderson Cancer Center:
Taking a Real Bad Day and Making it Worse

January 16, 2009: UPDATE 4

I am still waiting.

MD Anderson's record center in Georgia (?) says that they copied 84 pages and sent them to their mailroom on December 22. The new clinic still hasn't received them. I give up. I have an appointment with a primary care physician (I didn't have one) on the 19th and he can refer me to the new clinic, which starts the records request process all over again.

I'm still doing ok, but I have more symptoms now than I had when I started this process and I just saw a little Biography documentary about Gilda Radner in which her friends said "She was doing so well and then *snap* she was gone." Just in case, so my sister won't be cursing my soul if I *snap*, I completely cleared out my storage area and gave my BFF a whole truckload of stuff. This is the only truly positive thing that has come out of my cancer experience, by the way.

Dec. 19, 2008: UPDATE 3

I was going to wait patiently for the record transfer process to be completed, but my sister thought it was taking too long so she called MD Anderson today. Apparently there are TWO areas in charge of records transfers and I was given the wrong one by Wolf's office. The area where my request was sent hadn't even processed the receipt of the request yet even though it was mailed from here on the 8th. My sister was told that that office handles requests by patients for their own records, but that isn't completely the case since there was a place for me to put the name of the new clinic and its address--I wasn't requesting that the records be sent to me. Whatever.

The proper area--the one I should have been sent to in the first place--for records transfers said that I need the new clinic to contact them and request the records. If that happens, I don't need to pay anything and the records are sent within 24 hours (or at least a portion of the records).

But there is a Catch 22: according to the new clinic, they cannot request the records of a person who is not a patient and in order to become a patient I need them to have my records. OR a referral from MD Anderson. So my sister called for that referral for me. I'm deeply appreciative. I'm not too sick to make the call myself--I'm too sick of THEM to make the call myself. Naturally, when she called they were too busy to fulfill her request at that time and have told her that a nurse will call her back. They didn't say when.

***

Dec. 9, 2008: UPDATE 2

Will the perfidy never end???? Not to be dramatic or anything...

I called MD Anderson yesterday to have my records transferred to a new cancer center. I was informed that I needed to fill out a form and return it to them. They faxed me the form within the hour.

The form stated that in order to transfer records, I had to fill out the form and return it either by hand or by mail--faxing was not sufficient. I've sold two houses with nothing but faxed signatures but MD Anderson wants only originals. OK. I can do that.

But wait! There's more! There is a cost to transferring the records. The cost is $1.20 per page up to 60 pages and then $.70 per page after that. Since 16 months of cancer records probably amounts to quite a few pages, I expect it's going to cost about $200 or more for those copies of MY RECORDS.

But wait! There's more! Since anyone who wants his/her MD Anderson records transferred is probably a disgruntled patient, he/she is very likely circling the drain so it might be risky to trust him/her to pay that $200 so they send a bill (more snail mail) for the amount and then the patient can phone MD Anderson again with a credit card number and THEN, finally, they will send those records to the new clinic. By snail mail. Records the new clinic needs before it will even schedule an appointment for you.

I expect it will be January before I see anyone at the new clinic. I sure hope that waiting another month won't matter. I don't want to type any words that would make this page unsuitable for viewing at work, so use your imaginations.

Dec. 7, 2008: UPDATE 1
Please see update at the bottom of this page.

(December 5, 2008) In March of 2007, I was diagnosed with stage 4 ovarian cancer. I was more or less successfully treated (in remission until recently) for 16 months before I learned that, no matter what, my doctor absolutely would NOT speak to me between appointments. WOULD NOT. Here's the story in letters:

July 29, 2008

Dr. Judith Wolf
Dept. of Gynecologic Oncology
MD Anderson Cancer Center
PO Box 301439
Houston, TX 77230-1439

Dear Dr. Wolf,

I had my last checkup with you on July 8th and left Houston prior to receiving the results of my blood work. I don’t have a cell phone, but I do have an answering machine on my home phone in Mason. I expected that the results would be on the phone waiting for me, but there was nothing—no message from your office (though there were other messages and plenty of room on the machine for more) and no results.

The next day, I called early to ask for the results and was told a nurse would call me back. Early in the afternoon, I called again and at around 3 p.m. Jackie called me and told me that my CA-125 had gone up to 30 from 9. I was terrified. I wanted to know what that meant and wanted to talk to you desperately. I cried, I begged, and was finally told, unwillingly, that you NEVER speak to patients except during their scheduled appointments. I was shocked. I still am. I’d never heard of a doctor with this policy before.

I had been in your care for 16 months and didn’t know about the policy because I had never felt so totally overwhelmed that I needed to speak with you. I believe I had called the office only once or twice between chemos and not at all since then. But on July 9th I needed to talk to you very badly and there it was—you were not going to talk to me until my next scheduled appointment SIX WEEKS FROM THEN!

Obviously distraught, I told Jackie I wanted a different doctor—I wanted someone who WOULD talk to me. Naturally, she was in no position to grant this request. When I hung up, I was in a real state of confusion, fear, isolation, deep disappointment, and rejection. I had never felt so abandoned. The thought of suicide even occurred to me.

I finally looked on the internet and found enough information, or misinformation, to satisfy me that I probably wasn’t going to die right away and that any further treatment could be more or less safely delayed—if the 30 meant that I was getting a new tumor, my odds of survival were pretty wretched no matter what course I took and since I felt fine, I could probably just wing it until I didn’t feel fine. Of course, this could all be wrong since I had no doctor to talk with.

I’m sure that Jackie told your nurse, Kathy, how upset I was, but a full week went by before Kathy called me herself on July 16th. She told me she had tried to call me on the 8th, but I don’t believe her. I asked why she hadn’t left a message to call her or Jackie the next day since she (Kathy) was going out of town. She said my answering machine must not have picked up. I asked if she had tried to call a second time. Anyway, I don’t believe her. She was cold on the phone, too, and did not apologize nor did she show any compassion. She even called me “ma’am,” which she had never done in person. It was like she had never met me. I ended up telling her I didn’t want to talk with her or you. I don’t remember if I asked her for a different doctor.

The purpose of this letter is twofold. First, I want you to know what you and Kathy did to me with the idea that maybe it won’t happen to anyone else. Your policy of not speaking to patients between appointments led to my having the worst period in my entire cancer experience but it won’t be a total waste if I can save someone else from going through the same thing. The least you could do is tell any new patients you will never talk to them outside their appointment—I would not have wanted you under those conditions and maybe they will have second thoughts, too. And if they still want you, they are going into it knowing the rules.

Second, I want a new doctor at MD Anderson. I want a doctor who will talk to me if I need questions answered—it wouldn’t be often. You can attest to the fact that I’m not a needy patient in general. I would like this referral ASAP. If every doctor at MD Anderson adheres to the same policy of not speaking to patients between scheduled appointments, I will have to think of something else to do. Please advise immediately if that’s the case.

Thank you for your good work prior to this event. I still believe I am alive because of you. It’s too bad I couldn’t have continued living in a fool’s paradise thinking you would be available if I truly needed you but I can’t turn back the clock and the whole thing has hurt me far too much for me to feel comfortable in your care, or your presence, again. You probably are the best that MD Anderson has, technically, but I’m willing to accept quite a lot less experience, talent, and/or skill in order to have emergency accessibility.

Sincerely,

Marilyn Jones

***

I sent the letter via USPS, registered, return receipt, restricted delivery. Here is a copy of the returned green card:

I waited patiently and didn't hear anything so I wrote the next letter to the head of Wolf's department.

***

October 10, 2008

Dr. David Gershenson
MD Anderson Cancer Center
Chair, Gynecologic Oncology
1515 Holcombe Blvd
Box 1362
Houston , TX 77030

Dear Dr. Gershenson:

I sent the attached letter to Dr. Judith Wolf on July 29, 2008. I sent it Return Receipt/Restricted Delivery and marked it Personal and Confidential. The letter sat at the post office until September 17, when it was given to the MD Anderson Courier (according to the returned postcard). To date, I have had no response whatsoever.

I owe MD Anderson money and I’m pretty well tapped out and have no insurance, so informing you of my problem with Dr. Wolf may be nothing but an exercise in whining…I sincerely doubt I can or will be back, no matter what the outcome of my complaint is. And no matter what happens health-wise. No matter—I need to get this off my chest.

There’s not much to add to what I wrote Dr. Wolf except that someone later advised me of the existence of a patient advocate (not MD Anderson—I was never told about an advocate though it could have been in the piles of literature I was given—I was too sick to read it all) so I called her (didn’t write anything down so don’t have the date) and never received a call back. At the time, I was far too fragile to make a second call for help—I just went to bed. I felt I’d exhausted all my options, believed that nobody gave a hoot about me there (I still believe this with all my heart), and was unable to do much of anything except cry. I got over it. I’m not crying anymore. I’m also not recommending MD Anderson to anyone and never will.

Sincerely,

Marilyn Jones

***

Again, I waited patiently. Nothing. So I wrote the next letter to the head of the whole shebang.

***

November 1, 2008

Dr. John Mendelsohn, President
M.D. Anderson Cancer Center
1515 Holcombe Blvd.
Houston , TX 77030

Dear Dr. Mendelsohn:

I’m a patient at M.D. Anderson, or at least I WAS a patient. The last time I set foot there was in July and I don’t expect to be back. Apparently this is not important to my ex-doctor, Judith Wolf, or to her department head, Dr. David Gershenson. I wrote to the former on July 29th and the latter on October 10th. To date, I have received no response from either. This letter to you will be the last, of course. I can take a hint.

My trouble with M.D. Anderson is outlined in the first letter (both are attached). I won’t bore you by going through the whole thing here, too.

It amazes me that your facility feels that it is unnecessary to respond to two heartfelt letters of complaint that were submitted respectfully. Whatever your physicians think, we patients are not such inferior life forms that our concerns are unworthy of their valuable time.

Sincerely,

Marilyn Jones

***

An MD Anderson Patient Advocate called me on November 11th. We talked a little while but mostly she seemed sure that my first two letters had never been delivered. Bull. I told her I wasn’t ever coming back to MD Anderson anyway and I didn’t really want to hear from them again no matter what since it was obvious that no one gave a hoot.

Then I received this letter from David M. Gershenson shortly after it was mailed on the 17th. I guess that Mendelsohn asked him to write--I'm sure Gershenson had already considered me blown off since my original letter to him was written and sent October 10.

***

Did he address what I had written? No. Do I consider the letter patronizing and worse than nothing? Yes.

And now my entire "suboptimal experience" is out there on the information superhighway. Not a lot of comfort in that, but some.

UPDATE

UPDATE, Dec. 7, 2008:  I've received several messages from perfect strangers (and to me they ARE perfect) through a friend who posted a link to my story in one of her e-groups. I want to thank everyone for their good wishes, prayers, and general support. I'm not depressed and I'm not feeling hopeless, but it's still helpful to know that I have people I don't even know in my corner. If anyone wants to email me directly, please click on the mailbox icon here:

In case the worst happens, all my dogs have been provided for but there are a bunch of cats here who will need new homes and are up for adoption now. If anyone is interested, I'll be putting their stories and pictures on the next several pages of this site. All are neutered or spayed, youngish, up to date with their shots, and have tested negative for FeLV and FIV. One is a bit more than half feral but all the others are tame and run the gamut from voiceless to very vocal. Most are black, of course--no one seems to want black cats. I would be more than happy to ship or arrange other transport.

 

hit counter (hits)

Web Site Hit Counter
HTML Hit Counters (unique visitors) 

Saints celebrating feast days today include Saint Romaric.

Birthdays: Kim Basinger (1953, Athens, GA), James MacArthur (1937, Los Angeles), Sinead O'Connor (1966, Dublin, Ireland).

 

On to December 9
Back to December 7
Back to the Farm


Marilyn Jones 2001-2008