Today, I find myself at a real crossroads right now with big decisions to make about chemo and radiation, e.g., to do or not to do. If doing, how much and when?
Rather than make my breast cancer situation subjective, I need to be fully objective as I take the next steps in creating my plan of care. One big misnomer, by the way, is that doctors (solely) develop a patient's plan of care. No. No. No. Patients have a real responsibility to be fully engaged in the development (and revision) of a plan of care.
As a nurse and social worker, I have a unique perspective on decision making because I approach it "from the other side of the bed." In other words, I put my professional hat on and ponder: How would I handle this situation if I were counseling a patient?
Because I did not recover from the dose of Taxol last week, no-go on chemo this week.
After every chemo, there is supposed to be some recovery that includes feelings that are reminiscent of humanness. I have not had any semblance of humanness in, well, I can't remember when.
So, my husband and I had a long talk with my oncologist about where we go from here. My oncologist came up with a proposition: one more dose of Taxol with as much hydration (to offset the side effects) as possible.
I looked at him with glassy eyes and a blank stare. Emotionless. Neither happy nor sad. No longer mad. Repeat: emotionless.
Perhaps I was emotionless because I was so F-bomb nauseated that I couldn't extract an emotion. Or perhaps I was emotionless because I realized that this decision was about objectivity, not subjectivity.
Back to the discussion. We asked about the cost/benefit analysis of this dose.
"There is no mathematical answer to determine the marginal benefit of the dose," he said.
"The closer to the end of the plan the less likely any more chemo makes a real difference," he said.
"There are not enough subtraction studies (i.e., research related to reducing the number of doses of chemo given) demonstrating the outcome," he said.
"The reason for making the effort to explore the possibility of doing more Taxol is because of my (young!) age. However, there is no definitive conclusion that Taxol is (or isn't) going to make a significant difference," he said.
In a nutshell, I have now entered a space in which the marginal benefit of chemo cannot be measured.
"We are now at the point where we focus on not doing harm," he said.
Hearing this was a watershed moment for me in which I realized that more chemo is not necessarily better. Sometimes, more chemo is just that: more chemo. And chemo, by the way, is toxic.
This reminds me of Tony Duquette, who said, "More is More."
Speaking of more is more... MORE side effects from last week's chemo: neuropathy (dysfunction of one or more peripheral nerves) so bad that I cannot feel any of my 10 fingertips or toe-tips (is that a word?). The best way I can describe the feeling (or lack thereof) is it is as if I have put my fingers and toes into bowls of ice... for about 3 hours. And they stay frozen. Taking a shower actually hurts them. Thank you, Taxol.
Back to our dialogue. My oncologist said that while there is no data supporting it, after all of these years, he can look at a patient, see the blank stare and just know. It's the stare that says, "When does the war end and when is the camp liberated?"
Apparently the stare that I gave him earlier was that stare.
So, of course, my husband and I traveled down the path of "How do we know if we're making the right decision?" In other words, if I don't take the last doses of Taxol, will FBC come back? If so, when? Where?"
My oncologist gave one succinct, comprehensive answer to all of these questions (which also happened to be the most calming and inspirational thing he could have said to me!):
"You do what you can do and then you don't look back. Ever. There was a chance that you were cured the day we met (after my surgery). We are going to be confident that I am cured as a result of all of the chemo that I have done."
This is yet another reminder of me to focus on what I HAVE done (NOT what I haven't done). Here's what I HAVE done:
That's some heavy duty, serious chemotherapy.
OK, so back to the original question: Where do we go from here?
In the meantime, I have corroborated everything with another oncologist. Second opinions, by the way, are an absolute necessity when making decisions on this scale. Any physician who is threatened by a second opinion should, by the way, give you pause. Actually, I would FIRST give a lecture on collaboration and THEN run the other direction if any of my doctors was threatened by a second opinion. It's so NOT how I roll.
We have one sandbox (aka ME!) and we all play nice in/with it! (Did I actually just compare myself to a sandbox? Geesh.)
The Silver-Lined doctors are the ones who are focused on YOU, the patient. No ego. No arrogance. All support. All collaboration. All advocacy... for YOU!
"Too many people miss the silver lining because they're expecting gold." -- Maurice Setter
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