People Say the Darndest Things

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Life with MBC. There is so much that is misunderstood, unclear, and even unbelievable. For those of you new to this, MBC is metastatic breast cancer, or stage IV breast cancer. Once breast cancer takes up in a distant organ it becomes deadly. It takes the lives of over 40,500 Americans each year. And even if we don’t die from it, we die with it.

I truly believe that most people are well intended, and I don’t fault them for what they don’t know. So while I know others rant about the insensitivity (because the reminders truly can hurt), I thought I’d dispel some myths and offer some better options – at least for me.

Breast cancer is curable. Really, it’s not. Let me repeat that: breast cancer is not curable.

If you’re in that camp, then you’ve had one too many cups of pink Kool-Aid. I know early stage survivors often think and say that they are cured. I know because I once did. I was wrong. It’s true the majority of early stage patients will never again need breast cancer treatment – but if it’s really “over” then why do most of them have off the charts scanxiety around their annual CT scans. If they are honest, they will admit that there is fear involved in every scan, because they know it can come back. By contrast, how many people fear the return of pneumonia on a chest x-ray ten years later?

If you’re in the “the cure is hiding in a cabinet at ‘Acme Pharmaceuticals’ because they want to make more money selling chemo” camp, I assure you that Acme would make a bloody fortune for a “cure.” It’s just not there and Lee Harvey Oswald really did act alone.

For those of us who get the dreaded diagnosis of MBC or stage IV breast cancer…it will never be gone. We may be among the lucky few who dance with NED (no evidence of disease), or are disease-stable, but that doesn’t always last. Most of us will die of our disease; all of us will die with it.

INSTEAD: Understand that for now my best hope is an ever-growing pool of treatments. Ask about the state of the science. Like many MBC patients, I am very well educated and even know what’s in the pharmaceutical pipeline. Allow me to speak about living life with and through treatment, because even if I become an NED patient, I’ll likely stay on meds to keep cancer at bay. Let me speak about the mixture of promise and exhaustion – or the shitty hand I’ve been dealt. Trying to make it better by insisting there is a cure isn’t usually helpful. Listening almost always is.

 But my (insert name of distant relative or friend of friend who had breast cancer) says her alternative therapy cured exactly what you have! I know you want to be helpful, and who wouldn’t want to know about a magical pill or juice diet that could bring an end to this disease. But let’s break this down.

First, do you really know this person? Do you know the nature of her (or his) cancer? Where did it start? Had it spread? To which organs? What was the histology? You get the picture – each cancer is different, and needs to be treated as such.

Second, I keep up on what is promising in the world of interventions – all kinds of interventions – and I’ve probably heard of whatever therapy you’re going to recommend. If I haven’t, then there may not be much science behind it…

Third, most “miracle cures” are based on fantasy thinking or thin circumstantial evidence, and I don’t have time for that. If an article about an intervention can’t get published in a medical journal or the FDA denies a license, it’s almost always for a good reason.

Thinking myself fairly open-minded, I’ve read up on quite a few alternative therapies – from the Gerson diet to mistletoe, juicing to coffee enemas. I know there are clinics in Mexico and Europe that are doing remarkable things (just as we are doing remarkable things here). I also believe that there are many kinds of evidence, and we need to move beyond the western “gold standard” of clinical trials and give heed to centuries of recorded evidence of natural remedies.

But here’s the bottom line: when you suggest that your cousin’s husband’s sister’s niece’s husband’s mother was “cured” by shark cartilage supplements, you’re implying that there is something better than what my doctor and I have chosen. My doctor has more than a decade of education, practice, and clinical trial experience, and I have more than a decade of experience in the trenches. We read, study, question, and then make decisions. Please don’t undermine my trust in her, or my confidence in my choices.

INSTEAD: If you’re interested, ask more about a particular therapy and how it works. Ask what other options were available, and what might come next. Ask about my relationship with my doctor, so I can tell you how remarkable she is, and how grateful I am that I fell into her care. Even ask what I know about alternative and complementary therapies – just don’t try to sell me on them! And on the off chance YOU have had success with an alternative remedy, ask me if I’d like to know more.

Love the new do! Thanks. It’s a wig.

This and the related “But you look so great…” and “You have so much energy…” are all manifestations of the surprise that I’m not half-dead. I know you don’t mean it that way – that it’s a compliment and a happy surprise that I look good (when I do). But understand that it was no small effort to get here. Getting up and out can zap a day’s worth of energy sometimes. And I know I don’t have to bother with the wig or put on makeup or worry about how I’m dressed, but there I days when I do that for me. Catching my mostly bald and half-gray self in the mirror, or the pitiful looks of others at the grocery, can be depressing in and of itself. In fact, sometimes I look my best because it’s the only way to overcome a “worst” kind of day.

INSTEAD: Don’t assume inside and outside mirror each other. Feel free to tell me that I look great on the outside, but check in with how I’m feeling on the inside. “I hope you feel as great as you look,” is a great place to start the conversation.

When are you done with treatment? I know, it feels like forever, doesn’t it? That’s because it is.

Ending a treatment isn’t a good thing – it’s a scary one. It means that cancer has outsmarted yet another drug, and needs to be tricked to death yet again. That’s why having a long list of future therapies is like a life vest. The longer a treatment goes, the better I adjust to the side effects, or at least understand what to expect from them. The next treatment may work for a few months, or not work at all, and the side effects are probably worse.

INSTEAD: Remember that it’s a forever sorta thing, and I won’t be done with treatment until it’s time to move to hospice. As miserable as the side effects can sometimes be, I’m in no hurry to be “done” with treatment! Being done puts me face-to-face with the unknown, which can be a scary place.

 

I know it’s hard to know what to say, just as I know the things that might work for me won’t necessarily work for the next person, and what works today may not work tomorrow. As sensitive as I try to be, I’m quite sure I’ve put my foot in my mouth countless times, and will again. I’ve not meant it, and I know you haven’t either. One of the challenges of MBC is that days are unpredictable. Sometimes we feel ornery and tire of needing to explain. On those days – perhaps on most days – it’s best to just remind a friend that you want to support them however you can, to call from the grocery to see if they need anything, to drop off a meal, to send over a good book, or to lend an ear. Take your cue from them – there will be days when they need to unload some of the “icky-ness” that is cancer, and other days when its the last thing they want to think about. And they don’t always want to be the center of attention; what’s happening in your work, your family, your world matters too!

Whatever you do, remember that you are a vital part of the caregiver team, supporting a friend, perhaps providing respite for a primary caregiver, and helping to connect us to the rest of the world, when sometimes the insulated world of breast cancer, or Netflix, is where we spend our time.

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25 Comments (+add yours?)

  1. AnneMarie Ciccarella
    Mar 28, 2016 @ 08:27:26

    I love you. Period. Perfectly said, as usual. xoxox

    Reply

  2. Anonymous
    Mar 28, 2016 @ 08:47:46

    As usual your words are spot on….. I’ve heard these said so many times to metavivors, cringe try to move the message in a different way. You are a gift….

    Reply

    • Lori
      Mar 28, 2016 @ 16:18:04

      It’s s hard to know what to say – and what any particular person wants to hear, but treading lightly is always a good thing!

      Reply

  3. Deb Smith
    Mar 28, 2016 @ 08:54:21

    That is marvelous — thank you! I’ll send on to friends and family, who don’t seem to get the forever part. I’m so sick of being told, “But you look so good!” I’ve lived with stage 4 lung cancer for over 4 1/2 years. Take care of yourself!

    Reply

    • Lori
      Mar 29, 2016 @ 15:08:32

      I think we have ALL been there, and it’s hard to know what to say in the moment. I hope you find it helpful – and take good care! Thanks for dropping by!

      Reply

  4. Sally Rubiner
    Mar 28, 2016 @ 09:02:28

    Ditto.

    Reply

  5. 3laine 3liane
    Mar 28, 2016 @ 10:31:18

    Thank you so much. I know that most people want to be helpful and supportive but often can’t find the words. This is a helpful resource – maybe you didn’t mean it quite in that way, but it helps. A lot. And I hope you’re feeling well! ❤

    Reply

  6. The Accidental Amazon
    Mar 28, 2016 @ 13:30:01

    Amen, Lori. Can never describe these home truths enough. xoxo, Kathi

    Reply

    • Lori
      Mar 29, 2016 @ 15:11:23

      It’s one of those things that probably needs to circulate again and again. And again. It’s always new to someone, right?

      Reply

  7. Mandi
    Mar 28, 2016 @ 15:07:54

    Great list and explainers!

    Reply

  8. bethgainer
    Mar 28, 2016 @ 17:41:23

    Fantastic post, Lori. You tell it like it is.

    Reply

  9. Anonymous
    Mar 28, 2016 @ 19:31:13

    Love you Lor.

    Reply

  10. Rabbi John Crites-Borak
    Mar 29, 2016 @ 00:05:10

    Thank you for being my teacher and my friend.

    Reply

  11. jbaird
    Mar 29, 2016 @ 11:52:55

    Excellent post! You have nailed it completely. If I didn’t have brain mets I would try to express my own thoughts on the subject, but my brain is frazzled and must be retrained. Thank you for sharing your wonderful musings on this so misunderstood stage 4 plight of the privileged few.

    Reply

  12. Marsha Rothpan
    Mar 31, 2016 @ 22:17:35

    love you.

    Reply

  13. bookjunkie
    Apr 14, 2016 @ 01:39:39

    Absolutely love your post…a thanks for writing this 😘

    Reply

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