I’d like nothing better than to be able to stop griping about things going wrong.
But then… things would have to stop going wrong, wouldn’t they?
Today I was hit by a reminder that at times life can feel like little more than a numbers game.
My medical oncologist decided yesterday, without conferring with me at all, to prescribe hormonal therapy (HT). I was just given the Rx, without explanation, at the end of my herceptin infusion during the oncology nurse’s post-session instructions to me.
I didn’t immediately react. Partly because I knew it was coming; my breast surgeon had pre-alerted me months earlier. Partly because I didn’t yet know what questions to ask and I was already fatigued from the session. Partly because the nurse was not the right person to ask anyway. And, partly because I clearly recall the oncologist once remarking that HT was not as expensive as the other treatments.
I’ve been taking a “cross that bridge when I get to it” approach to this series of preventive anti-cancer treatments. It’s served me well in not getting overwhelmed with all the information I’ve chosen to digest about the various treatments I’ve undergone and have yet to undergo.
One step at a time… is one of my longstanding mantras.
I could, instead, have opted to leave all decisions in the hands of the medical experts treating me. Many patients seem to be satisfied to do that.
But if I’ve learned anything over the past six months (if not my entire lifetime), it’s the importance of being my own advocate. The way I know to do that, to keep some semblance of control over this process, this process that mostly affects only me and my disappointing body, is to listen carefully to this one-and-only body I have and then to try to understand the myriad of options open to me.
A good decision is based on knowledge and not on numbers.
Plato
It’s not easy. It’s not easy to stay evidence-based, not to get distracted by unscientific agendas and theories—the science is complex enough. It’s not easy to decide when the science seems inadequate to provide clear direction.
And it’s effing more difficult when a decision I must make is muddied by cost factors on top of what is increasingly looking like a crap shoot to me:
Everything I am subjecting my body to—from the lumpectomy to the chemo treatments to herceptin infusions to radiation therapy to hormonal therapy—gives me no guarantees.
I’m told there is no way to measure whether my body even needs any of it, whether any of the treatments are healing me, or whether any of it will keep me harmless from future cancer; there are no simple markers to test for.
It’s a numbers game: the science says on average this is the way to go and the numbers (statistics) are (admittedly) stacked in my favor.
Yet it could all be for naught. I have to let this thought go or it will drive me bonkers.
Life is a chess match. Every decision that you make has a consequence to it.
P.K. Subban
So back to my story today and how this all fits together.
My honey went out to get the prescribed HT for me. He not only had to go to three different drug stores before finding the particular HT prescribed in stock (and only one box), but he came home thoroughly dismayed with a receipt for over Peso 10K (that’s about US$200)! That’s for only 28 daily pills, not even a full month! Hellooo! I’m set to take this pill daily for five years!
Adding this cost on top of the many other medical expenses we’re in for adds financial distress to the physical and emotional distress.
My first move was to ask my oncologist to confirm that we had bought the correct medicine. We had.
I shared with him our shock at the price and asked whether there was an alternative. There is. And it’s a fraction of the cost. But it’s not as effective.
I spent hours researching online to confirm what he told me in a few chat words and to increase my understanding of the how and why. I have a dreadfully difficult decision to make.
At the end of the day, the success or failure of my decision will not depend on the numbers. But I have so little else to base it on.
And that opens a vulnerability that takes me beyond my comfort zone, a comfort zone that is already wide and deep.
Sigh; deep, deep sigh.
You write your life story by the choices you make. You never know if they have been a mistake. Those moments of decision are so difficult.
Helen Mirren
[…] of my body. And yet, you may recall I find these medical procedures and our decisions made quite a crap shoot. There is no […]
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[…] my treatment journey. Below I share how I moved toward a solution to the problem that was raised in my previous post on the hormonal therapy my oncologist […]
Well, this is a very unfortunate turn of events.
Science is completely inadequate when it comes to the human body and how individuals react to certain therapies.
It is difficult to say what I would do in your shoes. With what I learned in life and my experience I would probably have gone on a more holistic path but then I don’t know your exact medical condition and I am no medical doctor. Maybe (if you are in serious doubt) at a certain point you could ask for a second opinion.
In the end, I don’t think there are good or bad decisions (at least in the context of your issue). It might just be a big gamble.
Rational people are not inclined to accept this. They believe their knowledge and intelligence will lead them to the right decision. Alas we must accept that most things in life are the result of fate and not the result of our decisions.
“There’s no way to know what makes one thing happen and not another. What leads to what. What destroys what. What causes what to flourish or die or take another course.”
-Cheryl Strayed-
“Destiny is a worrying concept. I don’t want to be fated, I want to choose.”
– Jeanette Winterson –
and a last one I like particularly:
“If you obsess over whether you are making the right decision, you are basically assuming that the universe will reward you for one thing and punish you for another.
The universe has no fixed agenda. Once you make any decision, it works around that decision. There is no right or wrong, only a series of possibilities that shift with each thought, feeling, and action that you experience.
If this sounds too mystical, refer again to the body. Every significant vital sign- body temperature, heart rate, oxygen consumption, hormone level, brain activity, and so on- alters the moment you decide to do anything… decisions are signals telling your body, mind, and environment to move in a certain direction.”
– Deepak Chopra-
Thanks for your thoughtful comment, Sidney. 🌸🙏🌸 I would have liked nothing better than to be shown “a more holistic” path that has any real science behind it, but alas I found none. I now think that if I were a decade older I’d forgo this entire monstrous “preventive” program. But as I’ve written before, by accepting this very established (with little controversy) medical protocol, I’m taking a life-affirming stand.
One thing we agree on is that life offers much beyond our rational control. I attribute my resilience to a large degree to my way, throughout my extraordinary life, of making decisions and letting go of the outcomes. Once I make this particular decision, I will do the same–let go of the outcome. I won’t be the one obsessing or being anxious whether I made the right choice, that’s not me at all. Until I do decide, I will research, think, fret a bit, and listen to my gut.
Ah the tender journey through change. Away from pain is often fraught with just different “pain” and disruption: and, being angry and expressive is a beautifully healthy way to be through it in moments. Your experience through this is a wonderful opportunity to witness it.
I’ll not try to cheer you up nor even on, but I will cheer. Bravo and bring it on…you’re doing all you can, and beautifully too 🥰
You DO cheer me up, just by being the marvelous caring you, Joan… 🌸🙏🌸
So often “experts” direct us to make our choices based on the statistics. But statistics are only useful to examine a range of outcomes and what their probabilities are. There is a joke about a statistician in hell – they are made to spend eternity with one leg in a bucket of ice water and one leg in a bucket of scalding water so on the average they feel OK. So your doctor may be right that on the average the choice they are advocating will be best. But no one is exactly average. We each have our individual circumstances and predilections. Dr. Oliver Sachs said that medicine insists on asking what kind of disease does the person have, but the better question to ask is what kind of person does the disease have. So if the doctor doesn’t take that into account, bravo to you for asking yourself what are the right next steps for YOU and not just blindly following what they have directed. The doctor is the expert on medicine. You are the expert on YOU. The best outcomes come about when those two expertises work as a team.
That statistician in hell, Lable, is such an apt visual metaphor for the worthlessness of the numbers to my personal situation… thanks for that giggle. I agree with Sach’s approach… except at the moment I don’t have a clear vision of what my body needs really are and have nothing more than the worthless numbers to base my decision on. So I’ll be tossing the dice and letting go of the outcome… 🌸🙏🌸
I am with you, Cisca, in your questioning, thinking, problem-solving, decision-making, searching, raging, surviving…and you have a lot of wise support from the looks of the discussion threads. Sending you love and positive energies.
You’ve been with me for many decades, Jenniekins, through many (many!) ups and downs; and me with you. Your continued love, good advice, and practical support is precious to me. 🌸💜🌸