Friday, January 25, 2013


I know the five of you who read my blog are waiting at the edges of your collective seats for more news of my doctor dilemma. After stewing and pouting for an additional two weeks, I think it is time to face the changes.

The stream of warm impermanence...

I'm pondering that for a moment here. The stream of warm impermanence. Yes, my heart is still mourning the loss of my dear Dr. P. And no, I haven't talked to him. That seems to be the pattern for men I good-bye, no closure. I'm putting it in a box though, and tucking it up on a shelf. I have to move on.

I had a consult with the new oncologist. I don't know what a consult is supposed to be, this felt more like an appointment, but that's okay. The office in general feels far more patient-friendly. The nursing assistant (?) who conducted me to the exam room and took my vitals recognized me and turns out she used to work where I had my initial radiation done in 2006 and was the one who would call my name and conduct me to the torture. Very sweet that she recognized me. It took a minute for the synapses to connect, but I finally remembered her. She was the best part of that office and experience.

Side bar: the place where I did my initial radiation was an office of the corporation with which my first oncologist's practice merged, and for whom my new doctor used to work.

I say corporation rather than practice, because they are a business first, and doctors later.

Turns out this sentiment is shared at the new office. Let's code name it Flour Wings. The new doctor, a female doctor, Dr. O. (not Oz; many more letters) is very personable and nice. She spent quite a long time listening to my cancer story from the beginning, and listening to my current aches, and my gripes about the old office. She said go ahead and start the next Xeloda cycle (which I had on hand already) and they would get it all sorted out with the insurance and where I should fill it (Xeloda has been dropped from several insurance companies' prescription formularies this year. I know. Don't get me started.)

Then they drew my blood FROM MY PORT and will do so on a regular basis. I'm waiting for a call back with my tumor marker numbers today. The nurse who accessed my port was formerly with Banner Desert (the hospital in front of which I would rather die than be admitted again), and has been with Dr. O, through very serendipitous circumstances, for 8 years (I think that's how long she said). She's very kind also. ("If you've got a port, use it!" was her comment on blood work and ports.)

The office seemed to echo my feelings about my big issues; the machine of the other corporation (we'll call them Ironworks, and my old onc's office before the merger we'll call Dessert Onc, because let's face it, my onc was yummy), drawing blood in the office, patients being the reason they are there. I didn't ask the doctor some things that I wanted to, because I hadn't made a list and I am mentally very easily side-tracked. I have another blood draw in two weeks and will ask the nurse, and then ask the doctor when I see her again two weeks after that. PET scan probably after that.

I am just curious to hear their approach to metastatic cancer, stage IV, death in the cards from the reason for which they are treating me. I declined to see a doctor at the big Cancer Factory in town because I had met her previously at an event and found her to be very pink ribbon / cure / denial -ish. I suppose I should have met her and seen the set up also, but I was ticked that my new insurance's list of doctors online is not up to date, and I'm SURE that the Cancer Factory must have other doctors besides this one D.O. who treat breast cancer, possibly even someone with more experience in metastaticness. Metastaticity. 

I left the appointment at Flour Wings feeling like I had really found a good fit, that this was the place to embrace and feel cared for. And then another part of me piped up with how things that seem so good are often too good to be true, that the curtain comes down upon further investigation. All I can do is continue to have faith in the very high recommendation I received for them from a friend and current patient who is a retired nurse, and see how it goes. It's not like I signed a contract. It's just that after the emotional beating I've taken over the past year with the old office, my jury is hesitant to hand in the verdict just yet.

So I'm going backward through the alphabet of oncologists, from Dr. P to Dr. O. I don't know if there is a Dr. N out there, so I hope this fit holds up through the wash.

How do you "interview" a new doctor?

What questions should I have in mind to ask them next time?

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?