Thursday, January 3, 2013

Happy Damn New Year - Update

Thank you to those who left comments on the last Happy Damn New Year post. The indignation, support and occasional swear word were awesome; I've re-read several times and feel bolstered every time by your understanding and outrage at the situation.

I haven't solved anything yet, though, and I'm not okay.

On Friday, that fateful day, the nurse in the infusion room who broke the inane policy news to me, told me that they would arrange for me to have my blood draws in the outpatient center at the hospital. I told her I didn't want to go to the hospital next to them, (the reasons are several) and she said she would call the hospital near my home, at my request.

I wasn't sure if she would actually make that call, since after my appointment it was discovered that I was no longer a patient there.

A nurse/scheduler called me yesterday, from the hospital near me, while I was in a support group meeting (ironically at the hospital near the doctor where I am no longer a patient). Her message said she was calling about lab work orders from my doctor to be drawn there; call her back to schedule.

I haven't called back yet. Here is a list of my reasons.
1. I'm stubbornly refusing to DO blood work this week, Xeloda protocol be damned.
2. The doctor who ordered the labs is no longer my doctor, so what are they going to do with the results when they get them anyway? 
3. I'm afraid the hospital won't be nice about this whole request. I don't like it when the medical community acts "put out" by patients. 
I should re-play the message and reevaluate her tone. Perhaps I was over-reacting in my initial impression.
4. I don't know how my insurance (which is new) will deal with blood draws at the hospital (which is a new thing for me). 
5. I don't know where the outpatient infusion center IS in the hospital, and it could be a good walking distance, of which I am really not capable.
Did I mention I don't deal well with "new" or "unknown"?

I have an appointment to see my Primary Care Doctor (PA) on Monday. She will give me a few moments of coddling (like she always does if I need it) and sympathetically allow me time to cry (like she always does if I need it) and be completely understanding and helpful (like she always is).  Then she will help me put the pieces together and formulate a plan.

This is why I went through so much trouble looking for a new insurance plan where I could keep her AND my oncologist, and why, should push come to shove, keeping her was my top priority.

Well, push DID come to shove, but AFTER the Medicare open enrollment period was over and it was too late to make any changes.

I'm not sure if the blame for the split between my oncologist and my newly chosen insurance company lies solely with either one, suffice to say it was, of course, over money. The fault for the faulty info disseminated out to brokers and not updated during the open enrollment period when changes were made last minute IS definitely the fault of the insurance company. This does't put a very sweet taste in my mouth for them, going forward this entire new year.

I awoke this morning after a bad dream about being stranded and helpless to the realization that I could only be stubborn about blood work for a very few weeks, because I need a port flush in three weeks. DAMN.

But Cynthia (my PCP-PA) will help me sort it all out. She'll talk with me about doctors, and blood draws at the hospital and the painful bump at the base of my spine. Maybe I'll get my blood drawn at her office from my vein (which I can do like once every few months with minimal melt-down and hysteria), but not Monday. It's my personal protest.

And here's another thing...I'm not even sure my former-as-of-Tuesday Oncologist even personally KNOWS yet that I am no longer a patient there. The person who informed me, via phone call, during  my Chinese food on Friday, is in the insurance/financial department. She said something along the lines of "We'll need to get you  referral then", but I'm not sure that means the doctor will even be involved or informed. Then I called Monday to request a copy of my last blood work, a Rx for pain meds be called in, and that the Rx for Xeloda refills be faxed, "since this is the last day that he is my doctor".  His assistant called me back to very cheerfully tell me this had all been done. A little too cheerfully. Normally she doesn't even call back same day, but maybe she took it to mean "since this is the last day of the year". People don't always listen closely.

Either they are all a little too happy happy politey now that I'm NOT a patient, and doctor doesn't even KNOW yet, or none of them, including doctor, gives a rat's fanny that I've been cut off like this. After seven effin' years. With no warning.

I'm think I'm over the initial grief of the sudden painful break-up with no good-bye. Not sure if I'll ever get any closure with him. Not sure if I'll send a card or a note. I would be very angy if that were the way he found  out, and had seen nothing come across his desk internally.  I would be very hurt if he didn't actually end up caring either way.

The practice with which his practice merged last year is a big, impersonal, money-over-patient care, BUSINESS machine and that office has been a hot MESS all year. There is so little communication between the infusion room - front desk - doctor's exam sides, that I wouldn't be surprised if they haven't taken my February appointment off the books.

I am in no way sad to be leaving the practice business.

I am stressed to the breaking point over the transition. I awoke *this* close to losing it this morning.

The sobbing dark place I avoid because it's hard to climb out of for me. I cry. I cry plenty. But I avoid the hard sobbing because it is so emotionally painful.

What I awoke feeling this morning was cornered animal panic.

Did I mention I don't deal with change or the unknown well?


The Accidental Amazon said...

Holy effing crap. This is appalling. In the first place, healthcare should not be delivered by for-profit entities, in my opinion. I read a good article about this recently. If I can find the link, I'll get it to you. In the second place, do these nitwits really think they're going to keep patients and achieve good outcomes if this is the way they operate?

My friend, I sit here, with one foot in each camp, one foot as a cancer patient and one foot as a healthcare clinician, and I can tell you truthfully that I am developing a case of burnout just working in healthcare. Never mind being a patient. Well, you've read my blog, so you know where I'm coming from there. Thank heavens you were able to hang onto your PCP, that's all I can say. And that your PCP has a clue.

Why are there so many flat-out liars working in the healthcare biz? Bloody hell.

Several other cuss words are rambling through my brain right now...

xoxoxoxoxoxoxoxo, Kathi

Nancy's Point said...

Ditto to what Kathi said in her comment. WTF? You deserve better. Thank goodness you get to keep your PCP. And I know what you mean about that crying mode a person can get into. I recently had a melt-down myself over a much less serious deal. Anyway, I'm sorry for all the anguish. Hope things are going a bit better for you by now.