But I Don't WANT to See the Doctor ...

I felt like a 2-year-old yesterday morning.

I hadn't slept well, and I woke up with a stiff neck and in a really terrible mood. And it was raining--cold, damp Seattle rain. (Those of you who live elsewhere are probably scratching your heads and saying, "Well, of course rain is damp. How else would it be? But you don't know Seattle rain. Ours is damper. Trust me.)

I considered calling the cancer center and cancelling my appt. with Dr. Lee and also my treatment (zometa, by IV). Did not want to go there. Did not want to talk about cancer. Did not want a blood draw. Did not want to get answers to the questions that have been hanging over my head ...

OK, you get the picture.

And I know what was wrong: I hadn't been there in EIGHT WEEKS. Eight weeks without a doctor's appt. All I had during that time was one little MUGA scan, to make sure my heart isn't being damaged by the Tykerb. (Isn't cancer fun? My heart is fine, by the way.) Anyway, eight weeks without a doctor's appt. is something of a personal record for me, at least during the past six years.

During that time away from the cancer center, I'd made a fabulous trip with Younger Son, and--even though I was blogging almost every day--I was able to put my cancer in a box marked, "worry about this later."

Well, the time to worry was yesterday, and I wasn't ready.

So, after pouting, throwing things, and basically doing the whole 2-year-old thing, I SHAMED myself into going. That was how I got out the door.

I took a cab, because the marvelous red Corvair is STILL in the shop, four weeks and counting, don't even ask. It will come home when it comes home. And of course the cab driver was adorable. (We talked. His wife has MS. I didn't tell him I have cancer.) My cab drivers almost always are adorable, except for the guy who brought Younger Son and me home from the airport on Saturday, well, early Sunday morning by that time. He was a pill.

Anyway, cut to the facts.

Had my blood draw. One stick only.

Then, and this was truly amazing and I am going to write a second post about it, a woman from the billing office came to find me in the waiting room, to discuss the balance on my account with me personally and to set up a payment plan. I was gobsmacked.

She was warm, charming, and accepted my suggestion for how much a month I could afford to pay.

You have to understand that I am used to the University of Washington Medical Center, the Seattle Cancer Care Alliance, and Swedish cancer center, where often the first bill you see is a threat to send you to collections. And if there's an error in the bill that you are trying to work out--and have called and written to them about the matter--the threats keep coming even while you are discussing, negotiating, and getting copies of paperwork sent from your insurance company or doctor's office. I have been sent to collections at least twice for bills that were mistakes.

(I am not making this up. I AM trying to shame these cancer centers into doing a better job. I once rewrote a threatening letter from SCCA that I had received and sent it to Norm Hubbard, the top guy--COO, I think his title is--as a suggestion for a kinder, gentler letter they might send to patients who owe money. Don't think they used it.)

So this was pretty unbelievable--someone from the finance office who treats patients like real people. She didn't use the word "deadbeat" once!

OK, after all of this, I finally saw Dr. Lee, who was in top form. We went down my list of questions, which were these:

Q: Could I increase the dose on the antibiotic I'm taking for the Tykerb-induced acne?

A: Yes.

Q: Where's my tumor marker (CEA)?

A: 1.2 last time we drew it, which is normal, normal, normal.

Q: Is it time for a PET or other scan?

A: Yes. Dr. Lee recommended the PET/CT, which is the one I was hoping for. Because on the PET, tumors will light up. If my tumor marker is accurate--the whole point of doing the scan--then nothing should light up except my arthritis. If that is true, then I am in remission, which was something we had given up on years ago. This doesn't mean I'll be able to go off treatment, but it would mean there are no signs of active disease.

Of course, I've been saying I'm in remission since January, but doctors are more cautious souls.

Q: How's my thyroid?

A: Not quite normal. We can do more tests to see if I need thyroid meds. I asked to put this off for awhile because I'm having a bunch of tests in the next couple of weeks.

Q: I think I've overdue for a mammogram on my left breast.

A: Yes. We'll schedule that.

Q; I need to see my dentist. How do I explain what zometa can do to the bone in the jaw?

A: Tell him to check for osteonecrosis (bone death) of the jaw. (Let's just leave that one at that. I have no signs, but because of being on zometa for so long, I can't have a tooth pulled, for example. The bone will not fill in.)

And then, drum roll, the question that has actually been bothering me--way back in the dark back corners of my mind--was this one:

Q: How long do you expect the Tykerb to work?

A: We don't know. (What he actually said was, "I hope it will work for years." Then we got into the details.)

Now, that's a tough answer. I've been on it for almost five months. In a clinical trial, it only worked an average of six or seven months for the women in the trial.

I asked if Dr. Lee had any patients who have been on Tykerb longer than me, and he said no. So we are on the cutting edge, ladies and gents. I've e-mailed Dr. Livingston to ask him about this, but haven't heard back.

A favor: if you are on Tykerb, and have been on it longer than six months and it is still working for you, please e-mail me, or add a comment below, and let me know.

Now of course Dr. Lee had his own list of things to talk to me about, but his list was pretty much the same as mine, except for the mammogram and the last question.

Then, I went to get my one measly 30-minute IV, zometa, and I was done. My nurse, Susan, was done with her shift, but she hung around to be the one to stick me because sometimes it takes a couple of tries to get a vein on me and Susan got me first stick last time.

Also one stick. I was golden by this point.

While I was in the chair getting my zometa, I had a long talk with a woman who is also Stage IV breast cancer and used to be a nurse. She was in to get a shot, which she got, and we talked for most of the time my IV was running. She was bald in a very odd pattern, and we talked about that. Going bald, getting drugs. What to do with the hair.

Then, as I left the cancer center, I tried to call a cab to take me home, and was told it would be an hour wait. Another woman, also a cancer patient, was walking right next to me and overheard this, and asked me where I wanted to go.

Even though she was going north, she drove to me to my bank, waited while I made a deposit and flirted briefly with Roberto, the sweet Latin teller, and then drove me home, which was south. I'm used to people being nice to me, but this was pretty amazing.

She had a tumor removed from her cheek and is now having radiation, so I think she has Teri's kind of cancer. I gave her my card and the name of Teri's blog, The Cheeky Librarian (didn't have the URL memorized).

All in all, a pretty amazing day.

When I got home, I took Connie for a socializing walk, over to the drugstore. This is through a busy area, so he has to meet lots of people on the street and NOT jump up on them. It's a challenge.

Then I crawled into bed with a book, and Older Son came by and made dinner for us (yakisoba, a Japanese noodle dish) and I ate that in bed.

My next challenge, once I get caught up at home, is to lose 25 lbs. The thyroid may have something to do with my weight gain. But also, I don't get enough exercise to lose weight, because I get tired. Going to consult with Monica, the world's most fabulous personal trainer, who also has years of experience working with women with cancer.

Oh, my new cancer center is formally known as the Puget Sound Cancer Centers, and it is at Northwest Hospital in Seattle. The folks in the billing office are awesome, if the woman I met is any indication.

@ Jeanne Sather 2008.

Comments

[Dee]

Jeanne, Liz Kreger at www.lizkreger.com, has been on Tykerb for well over a year. She reported last week that her CT was clean, after having bone and liver mets, but her CA 15-3 tumor markers have been on a steady rise. I think that test has its own issues, as it might measure growing tissue as well as inflammation, and not just tumor growth. I think the CEA may be more accurate.

Also, from what I read about the trial, there were 320 women (out of a 360 who started) who stayed in the trial until they ended it. The trial stated that, of the 160 women in the Tykerb + Xeloda arm, 49 of them had recurrences and those recurrences happened an average of 6-7 months after taking Tykerb. Of the 161 women on the Xeloda only arm, 79 had recurrences after only 3-4 months. THERE IS NO MENTION OF THE OTHER 190 WOMEN IN THE STUDY AND WHEN OR IF THEY HAD RECURRENCES. I can ask my colleague, Sunil, who is pretty knowledgeable about how to access and read these medical studies, to let me know if there has been any follow-up at all on the other 190 women.

Also, I wanted you to know that I had a PET/CT scan in late October, just prior to my surgery in mid-November. It did not show any tumors at all in my bones or anywhere else. However, the CT scan I had in mid-February showed bb-sized calcium deposits in the bones and the guess was that they were little tumors. When I asked Dr. K how long they'd been there, his answer was "months". So, Dr. K said that he is now rethinking whether or not to precribe PET/CT scans or just CT scans - the CT scan on the PET/CT is not detailed enough. Dr. K consults with Dr. Livingston in Tucson, just so you know . . .I hate to worry you . . .

I'm glad everything else was fine - your CEA and everything else. Hugs!

[jeanne]

Dee--thanks! If you can get that info on the other women, I would sure like to know. But the truth is, we will just have to see. Thanks for telling me about Liz too. I think you told me before and I forgot.

The different scans all show things differently--that's why we usually have several different ones over time. And you go with the one that is most accurate for you, of course. Your calcifications are probably too small to light up on a PET--which in itself is good news.

[Jacqueline]

Jeanne, your blog is priceless. Simply priceless.

[Carver]

Jeanne, I am so glad that on top of everything else working out well that the billing person was also nice. That is fabulous and the way it should be but so often isn't. I'm sending out good thoughts for you and I hope that you will continue to have good appointments and that the scans will be good news. Take care, Carver

[Dee]

Jeanne, I just found a comment by someone who has been on the Xeloda + Tykerb combo for three years (if I'm reading the bulletin board right) and is still in remission. The link is:
http://community.breastcancer.org/topic/80/conversation/642745?page=1

Just thought you might want to know that!

[jeanne]

Jacqueline--I love you too! And I miss you--July can't come soon enough for me (well, except for all the house projects that need to get done before then).

Carver and Dee--love you both. Carver, you always know what to say. And Dee, I really appreciate your getting this info for me. I was feeling a bit fragile about getting out there myself, if you know what I mean.

But today is Sunday, the sun is shining, and everything is good. Look for a garden post today!

Jeanne

[Sara]

"She didn't use the word 'deadbeat' once!"

Wow, and her voice and face betrayed no snide judgmentalism? Score!