My hot buttons

As I started to draft this, it was about 9 pm, I had just gotten off the phone with my medical oncologist, and yet again he managed to push my hot button. (Yes, again.)

I’ll say off the bat that I’m impressed he offered to call right after I had placed questions to him in our Viber chat. Kudos to him for that.

If you’re not a current or past patient with gripes in your doctor-patient relationship, this may be a good post to skip. It may get a bit detailed and mundane.

Or not. I’ve visited enough doctors of all kinds over my decades to know this one doctor is not in any way unique. So, unless you’ve had the immense good fortune of never having to go to a doctor of any kind (or maybe even another professional like a lawyer or accountant), you may have (or have had) a similar experience to what I am about to describe to share insights to it as well.

Here’s the context: I had my fourth session at Makati Medical Center yesterday. It was for infusions of paclitaxel chemo and herceptin, back to back, 90 minutes each, preceded by the cocktail of side-effect reducers.

Again, other than my oncologist obviously glancing at his watch several times during our pre-session chat (that message is obvious, yes?), this was a relatively no-drama infusion session. I was glad to be given a bed (instead of the usual recliner chair) so I could snooze in comfort and the kindest oncology nurse I had the first session.

So, what’s my problem this time?

To make this short, let me list how this transpired:

  • Assistant doctor comes in to tell me my new dose of herceptin is 480 mg (no explanation/options given)
  • After paying the bill, the billing clerk tells me they missed to add one vial of herceptin, so I pay a second bill
  • When I get home, I see I was charged for a total of four vials of 150 mg, with each vial costing US$650 (total $2,600)
  • They used only 30 mg of the last 150 mg vial, meaning I paid an extra $520 for wasted medicine

I hope you see my blip here!

So, the questions I had sent to the oncologist was: How much herceptin did I receive today? I had understood from your assistant doctor that I was administered 3×150 vials + 1×30? Is that correct?

He called and explained the formula for how the figure 480 mg is arrived at. No problem with that so far.

Then I told him about being charged for a fourth 150 mg vial when I needed only the extra 30 mg.

I didn’t mince my words, “That vial is worth more than gold! Don’t they have smaller dose vials, like the paclitaxel has?

He didn’t think so. (If that’s correct, can I just say f*ck the pharmaceutical company? No doubt it knows the formula and that few patients would need exact multiples of 150.)

Looking for a rational way forward, I next asked, “Can the 120 excess be saved until my next session?

Probably not once the vial is opened,” he answered in brief.

So what other options besides wasting 120 mg of gold do we have? While my first priority is my physical health, I’d rather not end up in the poor house at the end of this year!

Some patients want the exact amount needed. Others have opted to round off to the lower number, a multiple of 150. It’s up to you.

There it is, button pushed!

We all have buttons that, when pressed, send us into survival mode.

J.S. Wolfe

How can it be up to me, how can I possibly make an informed decision, when I don’t know what the possible risks and outcomes are to reducing the protocol? What if taking the lower dose completely negates the year of these treatments I undergo and doesn’t do what we intend it to do?

I got the lecture to be reminded that I was in early stage and my prognosis was excellent (“yes, my eye balls are focused on exactly that and making sure my body is primed for wellness!”). He followed that with his admission that the reported science wasn’t clear on my question. He only knows the recommended formula. So ultimately, I’d have to decide.

Weeeell… can you guess how that left me feeling?

Now I have three weeks to “think” about it, until the next herceptin session.

I decided to sleep on this for a night before posting this. Sure enough, I woke up with another, maybe deeper, question.

Why does his putting decisions in my court push my button?

I don’t have a full answer to that right now. It may have something to do with me not wanting to be, just for once, in the driver’s seat, in full control. Wanting an expert to do his thing and confidently make me all better. Allow me to be vulnerable, submit to his expertise, and to trust I will be taken care of. Is this wishful thinking?

Is life telling me I have to remain the hero always?

The good thing about having our buttons pushed is that we can no longer ignore the sensitive areas where we need to heal.

Mary Buchan

My questions for you to think and share today:

  • What is your reaction to all this, any thoughts/insights/advice to give me?
  • Have you been in situations when a doctor/professional pushes the responsibility of making a decision on you when that decision requires expert knowledge you don’t have?
  • What are your hot buttons and what do they tell you about yourself?

PS. More to be grateful for: Heather and my honey, who continue to drive me to and from the hospital. Being pampered by my honey. Feeling good enough to go for a walk around the subdivision. You, my readers, and other friends who support with their love and care.

PPS. Note to self: don’t put on an old pair of slip-on shoes that you haven’t worn for two years and save yourself the embarrassment of having the inners fall out on your bare feet when you take them off to get into the hospital bed.

PPPS. If you’re finding any value in my posts, please share them or the journal with others. And I invite you to sign up for an email notification each time I post by clicking on the hamburger (three horizontal lines) on the top right of every page.

18 comments

  • Interesting conundrum. Chemo being an inexact science, i suppose the doctor feels safest following a protocol exactly. Should he have given you the option earlier? Maybe.
    About 5 hr after i had a cardiac ablation, my heart stopped working properly, and the nurse practitioner called for the doctor, STAT. He came in, looked at the cardiogram, and said he didn’t know what was going on, and would research now. When he left, the nurse said something like “jeez, that’s something when your doctor says he doesn’t know what’s happening” in a disparaging way. I replied “well, at least he is honest about it.” His openness gave me faith in him.
    His research was fruitless. Once again, I was unique. He explained what he thought might be going on and asked my permission to administer a massive dose of cortizone IV.
    I like this guy because he treats me as an equal, actively involves me in my treatment, and is open. But he is not an Asian in Asia, so culture may be a factor.

    • Sorry you had to go through that, Jill. Nothing in the medical field is exact; I remember reading an article some years ago that there are millions of unsolved medical cases. It seems to me that **not knowing** what’s going on, mostly for us, the patient feeling ill and/or pain, is among the highest anxiety-producing things we can suffer. Makes my conundrum quite tolerable. And yes, I too would want my doctor to be honest and tell me when s/he doesn’t know.

      In my next (5th) session, my oncologist himself raised the issue about the dosage again and we together decided to reduce it to the three vial level. He also suggested an option of having a four-vial session somewhere down the road, and I left that for a later decision. I think we’re getting used to each other’s style and needs, so even with the cultural difference, we are getting better in the teamwork.

      Thanks for sharing. 🌸🙏🌸

  • Interesting discussion.The protocols leave no room for manoeuvre or creativity… it is taken away from doctors and health professionals. Big Pharma plays a huge part in what information is released and fed to doctors. Perhaps they have given up questioning and yes some are on automatic?
    The rivers and land fill dislike the drug wastage too !

    • Yes, Alison, the lack of flexibility given to the medical professionals does hamper their ability to serve, too. My doctor raised this issue himself yesterday and we decided together to go for the slightly lower dose next time. I did also mention to him, after reading your comment, about the harm to our planet caused by wasted drugs. 🌸🙏🌸

    • Jodi, yes, frustrating… and I don’t know how to be more clear about my concerns. I have a sneaking suspicion that he’s operating on auto-pilot (as so many do) and real empathy (or being patient-centric) may never have been in his toolbox. Thanks for commiserating with me. It validates my perception. 🌸🙏🌸

  • Sounds to me like the presenting problem you are raving about is a red herring. The underlying – and mighty important – problem is, again, big pharma. The fact that the doctor has not questioned why the treatment is not delivered to him in different sized vials so every precious drop that is paid for is used…. that is the core of this issue. When the patient is paying, not the doctor, not the hospital, it may be annoying to them, but not as important to them, even though life-altering to you.

    The advocacy for patients to have access to the most affordable drugs and treatments without sacrificing high standards is one of the battles that is fought here in Canada where medications may or may not be covered by government. The push is for generic replacing name brands wherever possible. But I wonder if there is a fight against wastage due to simple packaging issues. You have raised a point I hadn’t thought of, since I pay little or no actual $$ for my many meds, including my Nucala injection every weeks ($2300).

    Now it is going to bug me until I get to ask my respirologist on my next visit!

    • Yep, I’m sure that drug wastage problem is global and rampant, Judi! Hence my crude rebuke to the manufacturer, I meant that. And it might indeed be cause for activism. But my peeve with the doctor is part of that problem, as you yourself point out. He, and others, just don’t give much thought to the patient’s holistic needs (that includes financial), despite his protests that he’s trying his best. 🙄 While most of the staff in the hospitals and clinics are kind enough, they are not critical thinkers, on the whole. (Don’t get me started on the crazy process I endured this morning getting a heart test.) There’s a colossal need for more design-thinking in all these areas. Let me know what you find out about your meds (and sorry you have to endure that!) Thanks for stopping by. 🌸🙏🌸

  • I got tears in my eyes reliving the feeling of dismissal by someone in authority who *IS supposed to help/know”. Is the stress of it a bigger ill? There is a common thread in the research that says it is.

    Indeed, your story is so resonant that the sense of partnership is lost at great cost. That change in the dynamic – who knows the harms that could have been prevented.

    Indeed, we don’t – and should – teach this as what empathy, respect and kindness are. It is core to our humanity – and yes, wellbeing.

    • Ultimately that’s what this is about, isn’t it, Joan? Empathy, respect, kindness. I’ll add integrity to that mix. There are real dangers in people, especially medical professionals and other service providers, acting automatically like robots, without using their critical thinking faculties AND being client-customer-patient-human-centric. 🌸🙏🌸

  • What if all the times you were in the driver’s seat in your life were preparing you for this critical moment when you are best suited to drive this experience to a successful conclusion? Yes, the medical staff must give you more info and options (and stop looking at g to hear watch), but there is no one in the world right now who I would trust more to drive this bus. You need you❣️ 💜

    • You may be right, Lable… I may just have to accept to keep being the driver. While it’s not really that hard for me anymore, the circumstances do add unneeded frustration to the mix, I do intend to come out of this well. Thanks for caring (I already knew you do). 🌸🙏🌸

  • “Though the doctors treated him, let his blood, and gave him medications to drink, he nevertheless recovered.”
    -Leo Tolstoy-

    You know that I don’t hold doctors in high esteem but once you are in the hands of one you just have to trust he will do what is best for you. Sometimes in life you have no other choice.
    I believe your doctor could not give you another answer if indeed he is following a “protocol”. You might or might not be fine with less Herceptin. From what I understand it depends on your weight. (mg/kg)
    The problem is that medicine is not an exact science and your doctor admits it.
    [He followed that with his admission that the reported science wasn’t clear on my question.]

    There is no right and wrong answer here.

    Since you don’t know and your doctor should know (although he probably doesn’t know either) I would follow the “protocol” and hope for the best. It is an expensive decision but then health is more important than any other considerations (at least if you can find a way to finance it).

    Wish you strength and know you are in my thoughts !

    • I don’t really disagree with anything you say, Sidney… but my common sense goes the other way. As you say (and I have said) medicine is not an exact science. 30 mg is only 6.25% of the full dose for my weight and I can hardly believe that would make the difference in a preventive situation. Remember, I ostensibly don’t have cancer right now; we’re changing my cell structure to prevent future cancer growth. It’s a US$10K question and that is significant. But I’m still thinking on it. 🌸🙏🌸

  • You are doing all the right things! Asking the right questions. Staying informed on your treatment and doses. Doctors do this all the time. How can the patient make an informed decision when they don’t have enough information to do so? I’m actually surprised the doctor called you back. Usually that’s tasked to a nurse or even office staff. As a healthcare professional myself this is the kind of thing that drives me nuts! Hang in there Francisca! Keep asking your questions and push to get your answers!!

    • Thanks for the validation, Ellen! I’ve been so client-centered my whole business life, this does indeed infuriate when I’m not given all the pros and cons. 🌸🙏🌸

By Francisca

Want to know when I post?

Enter your email address to subscribe to my journal and receive notifications of my new posts by email.