Monday, June 09, 2008

How it went

Argh. I met the oncologist in Stockton today. She’s Burmese, and there’s something of a language barrier—which grew quickly into a patience barrier, seemingly for both of us.

My friend was there to take notes, and to record. Dr. O.Y. objected to the recording; she said that Kaiser didn’t allow it. I would think that they’d support people getting (and retaining) good information, but oh well. We didn’t argue.

She brought up the path reports online, and let me look at them—but I didn’t have a chance to really read, or ask questions. I’d never seen the actual documents. I want copies (and e-mailed my regular oncologist, to ask if I could have them).

She asked me the same questions several times, about the lump I no longer have (changes, bleeding, growth rate). I gave her the same answers. Then I had to tell her three times why I’m not doing the clinical trial. She wasn’t arguing with me—she didn’t seem to understand. She interrupted, answering a concern she’d apparently assumed I had. Repeatedly.

It was frustrating. If I were going to be out here long-term, I’d switch doctors. Her web page says that her primary language is English. It clearly isn’t. She wasn’t all that warm, either. She wasn’t trying to be cold; just official. I’m guessing there’s some cultural miscommunicating, too. My oncologist in Oakland really listened to me. He took time. (I put him in the past tense, because he’s retiring right when I move back.)

I had to sign a consent form, for treatment. The oncology nurse came in to witness. Her demeanor was much more comforting; I liked her. But the form said that I’d had all my questions answered. That wasn’t remotely true; I’ll have an appointment later in the week (or Monday) with the oncology nurse, specifically to go over the details. Why I signed this now, rather than later, is beyond me.

I have to wait for the nurse to call me, to set up that appointment. It looks like I’m starting treatments next Monday. Good, I say—get me as adjusted as possible, before I go back to school. I’ll be past the horrible first month, then, and into the self-injections.

I had understood that those self-injections were to be once weekly. Dr. O.Y. insisted it was three times. She got a book and showed me. So now I have to prepare to be sicker than I’d thought I’d be. Grrr.

If I could have the same set of answers from one event to the next… I’m really tired of things changing up on me.

Dr. O.Y. sent me to get a baseline blood test. She’ll want one every month; I’m to see her once a month as well, I believe. Fortunately, the test only took one stick.

We went out for ice cream on the way home.

I’m so spent and tired—and I’m not even on interferon yet. This whole process takes so much out of me.

I mean really—how weird is it, to miss the care team in Oakland who escorted me down the damn rabbit hole to begin with? But I know them; they know me, and I’m tired already of introducing myself and my history to new people. Just treat me and let’s get it over with.

Keep praying, please: for emotional wellness, as much as for physical. My blood pressure’s rising, also; it was 138 over something. The higher number is never above 110. I don’t know if my body is freaking out or trying to tell me something—and I don’t know how to calm it down again.

I feel subtly out of control, like that. And even with clean tests, the possibility of cancer cells inside me makes me feel intrinsically dirty. Hazardous. Potentially polluted. I want to trust my body, support it, hallow it—and I don’t know how to reclaim the relationship I had, when I was first learning to listen. I am so afraid right now.

You are still my prayer circle. Thank you.

16 comments:

Kate said...

Prayers and e-hugs.
Kate & Angela

Ann said...

Prayers - and ask for a new doc - having a good relationship is key to wellness IMO. Call and have them tear up the letter you signed. Take care of yourself.

sonya said...

We're praying for you, too, Kirstin. (Ann is right about asking for a new doc; they're supposed to alleviate the stress, not add to it!). Be well. Sonya, Philip & Ian

Grandmère Mimi said...

Kirstin, I'm so sorry about the meeting with the doctor. It sounds awful. Now is not the time you need problems in communication. I don't know what to say. Both my doctors, the surgeon and the oncologist, were terrific, willing to spend time with me, and most compassionate.

You're stressed, love, and why not? When you're as vulnerable as you are, none of the medical staff should push you to sign something that you essentially don't agree to.

When you have your meeting with the nurse, tell her everything, and see how it goes. If you and your doctor can't reach a better level of communication, it might be best to change.

I'm still praying. May God bless you and strengthen you and give you peace.

Episcopollyanna said...

I am so sorry. She just sounds awful. I've never heard of a doctor who wouldn't let a patient record an appointment like that.

If you were coming back to Seattle, I have a GREAT oncologist for you. I swear, if I weren't already married (and I suspect he is too...) I would marry this guy. He's the nicest doctor I've ever seen. He's not my primary doctor but I can check in with him for questions.

Can they give you something (like Ativan or Xanax) for your stress/BP issues?

Please know you are in our prayers and that we are sending our love. xoxo

susan s. said...

Ah, Atavan! I took that. But I couldn't drive afterward.

Blood pressure issues? Mine always went up when I was stressed(as in meeting a new doctor). Perhaps you won't have it when you aren't seeing her as often.

(((((Kirstin)))))

Debbie of Boise said...

((((((Kristin))))))

Fire that doctor and get a new one. This is too damn important to have a doc with communication problems. And it really is a safely issue too. You don't need another reason to sue Kaiser.

Grandmère Mimi is very wise and spot on. I'm so glad you have her in your life.

Teresa and I are so praying for you. Fighting for the care you need sucks major pond water but fight on my friend. You need warrior spirit to fight for what you need and have a right too. There are times when warrior spirit is what is needed to realize God's dream for you and the all creation and this is one of them.

You have warrior spirit. You do take care of yourself. Still I wish you were here and I could feed you baked macaroni and cheese, take you moon chasing, have you over to watch DVD and eat fresh pop corn.

Hang in there. If there is anything I can do - only say the word. Teresa and I and Misty all send our love.

Jane R said...

Mimi is wise.

And how smart that you brought a friend with you.

Maybe this friend can hold your checklist of concerns, so that if you blank or hit a snag during an appointment with a medical professional, the friend can look at the list and speak up? (If you have given him/her permission to ahead of time, of course.) I know I've experienced that intimidation factor myself in medical examination rooms. You have it in you to speak up and advocate for yourself, for sure, but if you have someone there who can help with the advocacy, all the better.

Glad you have a nurse who seems sympathetic: that's a way in (or out!).

Sending prayers for strength, clarity, and peace.

Two Auntees said...

I am truly sorry you had such a bad experience with the oncologist. That can be so frightening. If this is a clinic, call the clinic and ask for the nurse or clinic supervisor. Describe the situation with the doctor and ask for another oncologist. Tell them that you did not have all your questions answered and ask them to document this in your medical record If you can't do this, ask your friend to do it for you. Being able to have a doctor you can communicate with is so important.

Your feelings are normal and okay. Your blood pressure is probably a result of all the stress. Find someone who will really listen to you and help you through the hurdles you are experiencing with your doctor.

Know that you are loved and being prayed for.

FranIAm said...

Prayers and more prayers for you dear Kirstin.

That whole thing sounds so frustrating and maddening to me. I am so sorry that you had to go through that.

Prayers for healing, wisdom, consolation and restoration for you always. You are carried on the wings of angels.

Kevin M said...

BIG HUG!!!!!!

(Is there an emoticon for that?)

Mimi said...

That is all kinds of wrong. I tend to be a "just treat me and I'll be on my way thankyouverymuch" kind of person, but I would definitely be looking for another doc.

Grrrrr.

MikeF said...

I don't have the remotest conception how the US health system works, Kaiser and what not, and how much say you have in your own treatment, choice of doctor and so on, but it sounds most unhelpful to say the least.

I'm still praying, Kirstin, and even more so now.

Bless you. Rest. Gather peace and strength from God, and know our prayers, all of us scattered pray-ers, and our love...

Mike

Kirstin said...

Thank you all, so very much.

(((((hugs))))) all around.

eileen said...

((((((((((((K)))))))))))))

I agree..if the communication doesn't improve, find a new doctor. This is your life, and you are worth it!!

Still praying for you..

Two Auntees said...

Just thought I would post my poem here for you since so many people wish you hugs.

Hugs

One simple embracing act
Costs the giver practically nothing
What he/she gets in return
Cannot be measured
Till it’s done

One simple act
Open feelings given
Without attachments
To hold on to someone
Releases the hearts
Most single important
Reason for being touched
Without expectation
Of return

One act so simple
Yet gives each
Who participates
More in returns
Than initial
Investment

SJ Riggle
December 16, 2001

You deserve someone who will listen to your feelings.

Sarah