Tuesday, July 15, 2008

Health care update

I'm tired and feel beaten up from interferon fever; this is a slightly edited e-mail that I sent last night. The news is good.

I got a new oncologist in the Valley. He listens! A. went with me. He listened to both of us (though I was feverish, achy and miserable), and answered our questions. He left the room for a good ten minutes, to research something. And he asked how the department could improve.

We're dropping me to half-doses, because my liver went toxic (it's normal again now). My old oncologist prescribed no change. The manufacturer's website reads, in case of liver toxicity you reduce the dose by half. I got really emotional in the infusion center; I thought they knew what they were supposed to be doing, and I don't want to get so toxic that I can't take this anymore. (If your liver enzymes are 10x too high, they stop you forever. Mine spiked to 5x normal.) I'm willing to be sick--with a reason. If they could have told me why they were continuing the full dose, I'd have done it. I didn't know that was even a decision I could make, and I was afraid of choosing wrong.

Will spare you the details of pushy nurses and pharmacists, and an oncologist I couldn't communicate with. (Literally. It wasn't about getting my way.) I'd been wanting to switch docs anyway, but couldn't get in until next week. My new doc squeezed me in today, at the last minute.

He listened. He answered both of our questions. My self-injections will be proportionally less, as well. I asked if they would still be effective. Yes. They start you with a lot, and whittle it down to what your body can do. My liver's sensitivity means, my body knows it's in there.

Will I be sick in the fall? Yes. But I won't know how sick until we transition me (in two weeks), and not as sick as I thought I'd be, or as I would have been.

Yay and alleluia. The food restrictions are lifting, also--they apply to traditional chemotherapy, not this. I can't have sushi while I'm still having infusions, but I can have fruits/veggies, raw and with their skins on, whenever I want.

A roller-coaster day, that ended well.

16 comments:

Joan Calvin said...

Oh, that's so wonderful. It's great to be out of the hell that bad docs can be. And I'm glad you're back to eating raspberries.

Jane R said...

Oh, yay! And I remember your tale of that initial oncologist who didn't listen. SO glad you have found a new one. This is really reassuring.

And you won't have to make or buy raspberry tarts. :-) (Though your friends out there may want to scope out a good source, just in case.)

Hurrah.

eileen said...

Thanks be to God!

This is good news all around. Still praying for you!

Mary Beth said...

Hallelujah! Best news I've seen all day.

susankay said...

So very glad.

Two Auntees said...

How did you get a new oncologist?

When Sarah was seeing the oncologist after her mastectomy, she got one that was filling in for the usual oncologist. He was absolutely horrible!! I could not believe the things he was saying. A student nurse who was working in the clinic came in the room when he had left for a few minutes to check on something and told us to disregard what he as sayng and just come back when the regular oncologist was back. She took a real risk in doing that but she had heard the things he was saying and knew that what he was saying was not appropriate or correct.

I called the cancer center the next day and told them about the Sarah's visit with their replacement oncologist. They apologized profusely. Got her back as soon as the usual doctor was back. He apologized to her too.

Sarah and I are very happy with the oncologist she sees now. He is great.

It is so important to let clinics know when their medical personnel are inappropriate, don't listen, appear not be be adequately knowledgeable or skilled. This will help the clinic give you the care you need.

I am so glad things are getting better for you.

susan s. said...

Oh Goody! Raw food! Yay!

Paul said...

Good news on multiple fronts. Rejoicing with you.
((((( K )))))

Caminante said...

It's bad enough to have to be dealing with an oncologist but then to have one who doesn't listen or says crazy things... Naomi had one whom they called the Quack because this oncologist just did weird things. It finally got to the point where they refused to meet with that doctor.

So I am very glad to read that you have found someone who listens.

And even more that you can have your fruits.

Ann said...

Yay --- a listening doc will speed you in your healing. Our raspberries don't come on until August in Wyoming.

Anonymous said...

Yes!!!! This is good news. And, a year AFTER treatment, you are going to make a fine mentor for others who find themselves where you are now.

Keep writing. Keep thinking. Keep fighting.

--many blessings,
it's margaret

Max Rainey said...

dear, dear Fierce Warrior of Light,
you are astonishing and powerful and a force to be reckoned with.
I am so profoundly glad and grateful that you found a doc who is both responsible and responsive!
Sending you big, big love and massive hugs.
yours in the struggle,
max

Kirstin said...

The treatments make me too sick to keep up with conversations I start--but I'm listening. I love all of you. Thank you for being in here with me.

((((((everyone)))))))

Grandmère Mimi said...

Kirstin, thanks be to God, especially for the new oncologist. Love and prayers flow your way still, my friend.

Leslie Littlefield said...

Kirstin,
We are praying for you daily. Stay strong...

Caminante said...

Just checking in on a Sunday morning before heading off to church to say you are ever in my prayers. I will light a candle for you shortly.