Thursday, September 24, 2009

Still free-falling down the rabbit hole

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When you read Alice in Wonderland, you will find yourself trying to make sense of an illogical story. Alice, the key character, also experiences similar frustrations. But in the end, she emerges wiser with the learning involved in each situation. Everyone faces absurd choices in life. If you shrug off these choices as anomalies to your perfect life, you gain nothing. But if you try to learn from these absurdities, you will gain a lot of wisdom. By Simran Khurana

I met with the Radiation Onc (aka "radio-onc") this morning. A friend called while I was waiting in the exam room. She asked: "is this another doc, or one of the med-pro squad?"

"This one" (female), I reply, "is a member of my original 'team.' and she insisted that I meet with her. She is uncomfortable with my decision to opt out of standard protocol treatment." She asked, wisely, why then are you there????  It was then I realized that the single most motivating factor for my presence in that exam room was likely because, for a mere $40.00 co-pay, I get fodder for this blog! Sick!

How was I to know that this was a portend for the conversation that took place between "radio-onc" and I over the next 45 minutes?

Radio-Onc took it upon herself to drive home her fears regarding METASTATIC BREAST CANCER / SIZE OF MY TUMOR / MY AGE / COMPLEXITY / RECURRENCE / REMISSION. (My last appointment with her was on her birthday. At this point I began to wonder if she is harboring some latent disappointment on how that day turned out.)

The first two minutes where the most "cheerful" part of our conversation. Radio-Onc relays to me that Kato (medical onc) informed her that I had insisted on foregoing chemo. And, that he was still recommending it because of... SIZE OF MY TUMOR.

I proceed to inform her that what I insisted upon was the conducting of the Oncotype DX test to determine if I would derive any benefit from what he was brewing up. And, that the test indicated NO.

I even informed Radio-Onc that I had pointedly asked medical onc if the size of my tumor gave him reason to question my RS score and the subsequent determination that I would derive little to no benefit from chemo...to which he had replied: "No, not at all." Hmmm, she says.

Radio-onc then says she wants me to speak to one, if not two, other medical oncs. She explains that if two out of three of them agree on a course of action, or inaction, she will respect my ultimate decision. . . . And, I am wondering: (1) shouldn't she respect my health care decision, regardless; and (2) is this truly genuine concern for me as the individual or rather, general discomfort on her part because I am challenging the protocol set forth by the ICBC*.  Or, could it be that she and Kato pulling a "good cop/bad cop" scene on me?

I walked out of there thinking that I am not feeling really comfortable about coming back to her. And I know I will not be gracing Kato's examining room again. . . . But hey, I got my $40 worth!!

Sidebar:

Radio-onc speaks to me about having only "one shot" at a cure (aka "remission"). She informs me that if and when the cancer recurs all that the ICBC* can do for me thereon is "maintenance." . . .Hmmm, I say.

I speak to her about the blood work my naturopathic onc ("nat-onc") conducted. How each and every one of the results were "perfect." And I instruct her that these were done while I had a malignant 6.2 cm tumor nestled into me. I share with her that nat-onc equated my results to those that would be expected from a tri-athlete who maintained a vegan diet. . . .Hmmm, she says.

Radio-onc speaks to me of the size of my tumor; and she clarifies that "tumor" and "cancer" are interchangeable labels, and that this should frighten me.. . . Hmmmwhy?

I speak to her about how Kato lamented that he has had women with ILC that have a recurrence within 7, 8 and 10 years after diagnosis despite chemo. And, should not this fact frighten them? . . . Hmmm, she says.


* ICBC = Industrial Complex of Breast Cancer (see prior entries where this was fully explained.)

4 comments:

  1. What a nightmare! It would be horrendous enough dealing with the cancer, but to have to navigate the "experts" and the drug companies just adds fuel to the fire. Thank you for sharing your stories and this incredible journey.

    Tahnja

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  2. Thank you for sharing your story with us. I admire your strength and wisdom. Most people are too frightened by cancer to perform so well as advocates for themselves... they simply do whatever their doctors advise. I have learned a great deal from you!

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