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?

Happy Damn New Year

I see from The Sarcastic Boob's latest post that I am not the only one suffering at the hands of medical politics right now, but I usually stew about a bad situation and cry it out and pout for a while before getting mad enough to finally blog it out.

And I could still have a few days of stewing left in me, so I thought I ought get at least the basics down on blog.

Last year, my oncologist's office merged with another oncology business (I say business, not practice, because it is clear after a year where their focus lies), then six months later broke with the MAJOR insurance/hospital group in our area (over money). I had a "continuation of care" to continue seeing him until the end of the year, at which time I would have to change insurance companies or change oncologists.

I worked very hard (or rather, my insurance broker did) to find a Medicare plan for me for 2013 that my oncologist now accepted, which also included my primary care doctor, without whom I would be lost. We felt certain that (in November, during open enrollment) we had found a very good solution for me.

Friday, midday, I saw my oncologist. My oncologist of SEVEN YEARS. I thought all was fine, we had a nice visit, I left my new insurance card info with the front desk. I had my blood drawn through my port in the infusion room, at which time the nurses informed me that as of 01/01/13, they would no longer be drawing any blood through ports in the office. Not even on an exception basis, the basis on which I had been getting my blood drawn there still since the new business tried to nix it. I had JUST seen my doctor, who surely KNEW of this change, who definitely KNEW I was one of the exceptions he had cleared and he said nothing. I told the nurse that I would no longer be getting weekly blood draws then, Xeloda protocol be damned. I have bad veins in the one arm not at lymphodema risk, and frankly I doubt I could even do MONTHLY blood draws in the traditional way without serious mental and physical pain. (long story there) She told me they could set me up to be able to the infusion center on an out-patient basis at the hospital. I asked if she would arrange it at the hospital nearer my home, rather than the one nearer to the oncology office, since obviously, why would I make the weekly drive to the further facility. I also have vowed never again to go into that particular hospital.

Needless to say, I was crying. I was crying on my way out of the building, where I ran into my oncologist. In my tears I said to him, in accusation, that he hadn't told me I would no longer be able to get my blood drawn there. He indicated that the decision had been taken out of his hands this time. I told him I could not use my veins, and that the nurses said they would set me up at the hospital. He assured me that he understood that I needed to use my port.

He KNEW how I am about needles, and KNEW of the policy change, and KNEW that after seeing him I was headed to the infusion room for a blood draw, where surely he KNEW the nurses would inform me of the change in policy.

Frankly, I think he WIMPED OUT (if someone is a woosie, what is the past tense of that? Woosed out?) He WOOSED out on being the one to tell me about it.

I sat on a bench in the building and cried while texting someone for a few minutes, then made my way to my car and sat sobbing for at least 30 minutes. When I was regrouped enough to drive, I headed home, and on the way decided that I needed to drown my sorrows in chow mein.

But wait, this isn't even the BAD part.

About a half an hour later, in the Chinese restaurant, the Oncologist's office calls to tell me that my new insurance, the one I so carefully chose, would not be accepted by them for the new year. Doctor is not on my plan. Oh yes he is! I insisted.

This is where it gets bad, and I haven't sufficiently stewed to be able to tell this part of the story without sending myself back to the sobs in which I spent the rest of Friday.

I have involved my broker, but it is looking like my doctor had a last minute dispute with this carrier and pulled out...AFTER the open enrollment period. (Dirty Pool! Foul! NOT Cool!) They have been messing with patients lives for a year now, ever since the merger.

SEVEN years I've been with this man. That's longer than my marriage lasted. Seven years I've adored him and depended upon him. In those seven years, I think the longest that I've gone without seeing him was 4 months, when we had just barely started lengthening out the period of time between exams, before my Stage IV diagnosis when I started seeing him monthly again.

And now it looks like I will indeed be interviewing new Oncologists. Something I've dreaded and never wanted to have to do, thinking I would be with this doctor to the end of my days. I made an appointment to see my Primary Care Physician next Monday to try and sort some of this out.

Goal for now? Not to fall into the sobbing dark place again.