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Bad Medicine

poison.jpg
Medicine…poison…sometimes it’s hard to tell the difference.

Primum Non Nocere is Latin for ‘first do no harm,’ a guiding principle for physicians that, whatever the intervention or procedure, the patient’s well-being is the primary consideration.[i]

That entire sentence above is reproduced in its entirety from the website referenced at the bottom. The composition is clear and concise, but I do see one leaky point.

Well-being.

Who decides what constitutes ‘well-being’? The doctor or the patient?

[Note to Medical Professionals: The following points and expressions I am about to make are subjective and, therefore, not up for debate. I don’t claim to be wholly rational or logical, but the realm of fear and feelings rarely entertains rationalism or logic. I won’t tell you not to take it personally, because you might. And one thing I’ve learned this year is what you feel is what you feel. Please remember that about me, too.]

Since January, I have endured 38 doctor appointments, 2 surgeries, 1 hospitalization, 5 CT scans (1 PET), 1 MRI, 5 infusions, uncountable needle pokes, and have been drained of 125 vials of blood. That’s what happens when you get a cancer diagnosis.  I have had just about enough of ‘treatment’.

Doctors are trying to heal me, this basic fact I understand. However, the Hippocratic Oath notwithstanding, I have realized that every time I had some kind of medical encounter this year, the result was, from my perspective, a marked decrease in my sense of well-being, both physically and emotionally. In other words, I feel fine until I have to go to a doctor.

This has been a ‘Knock down, Get up – Repeat’ kind of year. Terrible for well-being.

At my lowest points, I felt sure that my doctors were trying to kill me, or at least only concerned about data. Bouts of gastrointestinal turmoil and a rash so bad that the short four letter word seems inadequate (precede by other four letter words, with action, to approach adequacy). Each bout of side effects kept me in its grips for 2-3 weeks, and overall altering life dramatically for a month or more.

I felt sure that I was being poisoned. Five immunotherapy infusions into a course of eight, I made the agonizing decision to stop infusions, suspecting that my body had had enough. Wednesday was my check up and decision day.

No sign of cancer, but the danger of system-wide inflammation from Yervoy has manifested in my thyroid gland as Hyperthyroidism. And the level of antinuclear antibodies in my blood is sky high (ANA TITER test for autoimmune response marker).

My body is now shouting from the rooftops: ENOUGH. This situation of toxicity is enough for even the doctors to say, No more infusions. Well, we finally completely agree on something.

At least the diagnosis of hyperthyroidism explains my recent sweaty mania.

Good News: My immune system has been galloping like wild horses, hopefully seeking and destroying possibly lurking microscopic cancer cells. Bad News: Whoa, horses. Let’s not gallop over a cliff.

I would like to get back to my life now. My decision to stop infusions was based in that simple desire. Because, infusions = side effects = misery = losing a month of my life. With the very real possibility of losing my life altogether from side effects.

Though I’ve achieved the “stop infusions” part, I didn’t anticipate a different set of issues.

Well-being. Right now, that sounds like a faraway planet. But, I do feel better than I did in the moments leading up to my checkup. Perhaps, if well-being is understood as a spectrum, the planet is at least Mars and not Neptune. Not beyond our solar system, not about to fall into a Black Hole.

Well-being. I would like to go there.

 

[i] http://medical-dictionary.thefreedictionary.com/First,+do+no+harm

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  1. The last four years of care giving has taught me to listen to doctors and then do what I think is best. Not to blindly follow, because they often don’t know the person well enough. Its not their fault, but it does not mean their best is my best. I pray for your continue healing in spirit and in body. Always, fight for what your know is right for you. No apologies for that. Forgive the poor grammar and ending in a preposition.

  2. My heart is with you. You are a 1,000% right to push back and insist on listening to what your body is telling you. I wish I could help in some way. Do know that your bravery and wisdom are deeply appreciated!

  3. Well-being is also my hope and prayer for you. I was unaware of the extent of your miseries, so I thank you for sharing.
    Love,
    Your friend, Diana

  4. “Do no harm” is as impossible now as it was in the days of Hippocrates. It probably should have been “Help body and spirit”. You are such a little person to endure so much chemistry. You still express your feelings powerfully though, so I know you will not go gentle into any good night. I’m glad to see you writing again. Keep purging and I’ll keep praying that well-being is within your reach.

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