What Can We Do?

[Giant Fucking Disclaimer: For those of you who think you’ve done or said something awkward or insensitive to me while I’ve been sick, this post is not about you. Lord knows I’ve made more mistakes than everyone put together, and those in glass houses cannot throw stones. Instead, I wrote this post for the countless people who have asked of me the question that stands as its title. It’s for all of us, then, since we’ve all had this question. At least I have.]

When I was diagnosed the first time, in October 2010, I cried three times.

Once when my boyfriend at the time got home the day of my diagnosis and the two of us sat on our bed, silent with our heads together.

Second the day before my mastectomy, sitting in my old car in BC’s parking lot with one of my best friends.

Third the day I got my implant inflated as much as possible in order to stretch my skin to prepare it for radiation. My plastic surgeon left the room and, curious, I peaked in the mirror, only to find a version of my left side that more resembled Dolly Parton than me.

To draw some perpendicular, or even parallel, line between these moments and my reaction to my second diagnosis would be at best disillusioned. Fear has never been something I’ve felt, really. I don’t get afraid easily, but the thing that most recalls, or is the consequence for, that fact now is that I don’t have the vocabulary for the rushing sound and almost physical sensation that overtakes your sense of self when you get this kind of diagnosis. I feel like Alice in Wonderland when she’s falling down the rabbit hole, watching only once familiar objects fly by because they are the ones staying still. Far too often I feel unmoored and alone. And I don’t know how to stop. Or, more accurately — there is no way to stop.

This isn’t fear, I sense. I’m not stressed, I’m not even nervous. Anxiety, frustration, tension, sadness — none of these seem at all relevant. I am horrified. At best. And that’s pretty much how I act much of the time.

Horror isn’t pretty, and if I still feel this amplified and magnified version of it almost six months in, the first three seem far more daunting in retrospect. As I’ve mentioned here before, the psychiatrist I met with in the first days after my diagnosis warned me about those first three months. “Watch out for them,” she told me. “Your only job will be not to commit suicide. Everything will feel awful, and terribly frightening, and overwhelming almost all the time. If you have panic attacks, if you’re too afraid to move, if you cry all the time, that’s okay. Just bear down and do what you have to to get through the first three months.”

Well, fuck.

But recently I’ve been asked by a number of people, “What can I best do in this situation?” More and more friends of mine who have family members in with similar diagnoses approach me for the best way to act, the best things to say, what to avoid. I’m happy to help, and there’s a wealth of literature online that addresses these concerns, especially a series of incredibly funny blog posts and message board threads about the most awful and hilarious things people say to cancer patients with the absolute best of intentions. Like about that bus that’s going around killing everyone. Or how you’ll be okay because you’re tough. Or how you don’t look sick.

But what I think is unsaid sometimes, and what I want to address here, is what those first three months are like and how to even approach navigating them. I’ve referred to them, and danced around them while seeming to hit them on the head, but there’s a series of things I’ve learned about moving a cancer patient through that worst time that are worth sharing. Not that I know how to do this, because I really, really don’t. But that’s where I want to start: that nobody can possibly know how to do this, especially those of us who are sick.

And this is where those three times I cried after my first diagnosis come in handy. Non-terminal, non-stage iv cancer is so, endlessly more manageable. It has a recurrence risk (duh), but the default is “we can cure you,” — and, a good portion of the time, it’s true. You’re told you’re going to have what amounts to pneumonia for 9 months to a year, and some surgeries, but that you can walk out of it. Each time I cried in that context was at a landmark, something that signaled another loss or another major change. But this time around I just cried. I cycled between crying out of this depth I didn’t know existed and feeling nothing, just entirely numb, old, gone.

That sort of oscillation is difficult to capture. I think I had moments in the first three months that resembled happiness, but at best they were fleeting, incidental, and superficial. So: I was never happy. I couldn’t comprehend of what happiness would look like, or feel like. I either felt nothing — which I tried to mask as happiness or at least contentment most of the time — or this thick, primal horror. And worst, I felt inhuman. Nothing I did felt real, even though I would have done anything — and tried so, so much — to feel real, or normal, or even moderately okay again. I felt alone, isolated from everything, unable to connect to anyone. I didn’t know how to talk about being sick without initiating this deep discomfort for everyone involved, but nothing else was on my mind. I had weird reactions to the most mundane, everyday, and even once enjoyable things: I would cry thinking how temporary they were, and then I would cry more — and with a strange, disembodied anger — because they had nothing to do with being sick, which was the center, the absolute of my life.

Panic no longer seems the word. Again: I don’t have the vocabulary.

And what the hell was everyone — anyone — around me supposed to do? None of us knew how to handle this — least of all me. I may have done the best I could, and many people may praise me for my grace, my focus, my strength, my spirit, but I didn’t know what else to do. And while those traits of mine do absolutely exist, they are almost exclusively layers that bed down the reality of having cancer, how it makes me feel, what it does to me. And if my best guess is this unrooted stab in the dark, how could anyone else know what to do.

Well, in the two and a half months since those three months ended, I’ve figured out some of it. I think.

Being close to someone with cancer is endlessly difficult, but there’s one crucial, awful truth that will both alleviate you of a lot of the uncertainty and fear and double down on those emotions as well. I’ve mentioned this to my closest friends, and I’ve been reluctant to post it here, since it seems coarse, callous, depressing, narcissistic, and honestly insensitive. But: after I die, the rest of you will still be here. And you’ll be okay. And you can figure out how to be okay then. But, until then, we gotta figure me out first.

First, a disclaimer: This isn’t to say that those around the cancer patient don’t need to take absolute, careful care of themselves during this time. If you don’t watch out for and tend to your own wellbeing and welfare, there’s no way you can help someone who’s been diagnosed with a terminal disease — literally no way. But you have the responsibility to do that independently of the patient and their wellbeing. Because there’s almost nothing worse than asking a cancer patient to reassure you that you will be okay, that everything will be okay, after she dies. Because, for her, that’s the biggest piece of bullshit.

But, even if you know how to manage yourself and your happiness, what can you do for the cancer patient’s? Because no one is responsible for or should be dependent on another’s happiness. And though cancer patients are in a special context — they need more support, more reassurance, more company than normal folk (and by all means give it to them or ensure that you help them find it as much as they need, as much as you can) — they still need to stand on their own two feet.

Early on in my diagnosis, a friend of the family asked me what she could do for a young woman in her office who just received a similar stage iv breast cancer diagnosis. I told her something I still stand by, that I think transcends office relationships and can be applied to every relationship you may have with a terminal cancer patient.

Treat them like normal, except for when they need to be a cancer patient. Then, let them be a cancer patient, and remove all obstacles to that reality.

This is a fine, and difficult line not to cross or fuck up, but I know it’s not impossible. A number of my closest friends who have been in the trenches with me during this have achieved it with poignancy, grace, and persistence. The best kind of description I can muster is a series of moments they’ve given me. Walking this line has a lot of bizarre, complicated, awful meanings. It means commiserating with the awful, intense, irrational body pain I’m in all the time, and agreeing with me that it sucks, but making fun of me when I laugh at its persistence when I’m on the wall or on a horse. It means acknowledging that there’s no possible way you can imagine or understand my exhaustion and pain, but you can still help me make sure that that singularity doesn’t make me feel alone. It means laughing at the ridiculously absurdity of my treatment length or my nerves the night before, every fucking time. It means never arguing with me about my treatment, how I feel because of treatment, or what treatment does to me, but rather just admitting that yeah, there’s no real fix, and yeah, it sucks — it’s always there and it sucks. It means teasing me mercilessly at chemo for my squeamishness about the giant needle that goes into my port and my insistence on having tator tots from the cafeteria at almost any time of day on threat of death by dismemberment. It means showing up at my apartment at 10:30 at night on a Thursday with pretzel m&ms and a homemade Ports Rock tshirt. It means looking me in the eye and, when I need it, admitting that I’ll die, soon, young, and that no amount of good days can push that off or diminish it.

I guess, what this adds up to, if I look at it closely enough, or from the right angle, is this: the thing you can do for a cancer patient is never refuse her reality. In your life post diagnosis, your hold on reality becomes almost unbelievably, almost comically, tenuous. And this is because reality has shifted under your feet as do tectonic plates that should never move — suddenly, massively, permanently. And, for so many people who do their absolute best to make cancer patients feel better by cheering them up, or try to fix their mood, their best attempts end up denying the cancer patient’s horrifying, crushing, all pervasive, unending, already horribly isolating reality.

And, three months in: Things do get better. They really do improve, get more quiet. Laughing seems less alien. Dancing comes back. The constant internal howling and screaming smooths to a dull roar that you can almost pick out words from. But that reality never entirely disappears, and so acknowledging it, staring at it, knowing it, is I think the best you can do. Sometimes that feels overwhelming, painful, so fucking unfair. But it’s still there. There it is.

And then, when you feel that reality, when you know it’s there (but that still, somehow, even your best attempts only begin to approach it), you can be proud you’re still standing. And that everyone who’s best for you during all this massive bullshit is standing there with you.

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13 thoughts on “What Can We Do?

  1. This will help so many people, Kiri. Your generosity of spirit has always been one of your greatest gifts. This post deserves to go viral, and undoubtedly will. Thanks, love.

  2. A truly in-depth, explicit insight into behaviors that are often troubling and uncomfortable. You clarified so much in your usual unselfconscious way.

  3. Thank you for this, Kiara. Your message will help so many people! You have a great impact on the lives of people all around the world, including many who have never met you in person. I am just one of the masses who is touched and humbled by you, and I appreciate you so very much.

  4. My favorite part:

    But: after I die, the rest of you will still be here. And you’ll be okay. And you can figure out how to be okay then. But, until then, we gotta figure me out first.

    I feel like it should be inscribed on my forehead!

  5. Your Mom shared this on Inspire. All I can say is wow. We each have very different journeys, but somehow it is still so similar. Its like I’m speaking without moving my lips. Thank you.

  6. Kiri, Your words brought me to tears because they are so right. You say you don’t have the words, but you really do. I have been feeling the same way since July of this year and haven’t been able to clarify it in my mind, never mind trying to put it into words.

    There is such a loneliness about this diagnosis even when love ones and loved ones are all around and doing everything they can. It’s so different from the original diagnosis that can be cured. My first 3 months are almost done – no one warned me about them, so thank you. The horror is just that. When I read all the comments from other stage IVs, it scares me so much. At this point, I am doing well, but know that this time will end. I just don’t know when.

    Thank you again. I had heard of you several weeks ago when I was visiting a relative.

    Dawn

  7. very good post which i am sure will help many around you. however, i don’t think the default is ever ‘cure’ when it comes to cancer. a good friend of mine who had stage 2 triple negative breast cancer was in remission for 12 yrs and just 2 weeks ago diagnosed with ovarian cancer. i had my own ovaries removed when my mom died of ovarian cancer just weeks after i finished radiation for my non-stage-IV, non-terminal breast cancer. however, having seen way too many women with HER2+ breast cancer go from stage one to stage four, i will say that there is no default ‘we can cure you’. just as i’ve known women who were stage 4 with mets of all kinds, sometimes even brain, live over a decade. there is no default with cancer, and no truth, because doctors know nothing more than any of us about what our cells are doing in there even after the golden ‘five year’ mark. all one needs to do is look around her2support.org to see the myriad ways this cancer behaves. so while other stages are more manageable, none of us are free from the specter.

  8. What people forget about those that have cancer is that the cancer has not become part of them, they are still the same people with the same dreams, likes and dislikes; the cancer just invaded, disrupted those dreams, likes and dislikes. You want to be seen as YOU, not you with some appendage called cancer hanging off you.

    Too often people react to you, like the cancer is catching or you’ll break like a glass beaker if they dare treat you like normal. Conversations become difficult and often stupid questions are asked and suddenly you feel normal is something of the past.

    When my daughter Jesicha died she there were many that were surprised, that they did not know she even had cancer. This is just what she wanted. She lived her life full and without cancer being a ball and chain to her. Never give it the energy or attention it wants.

    There is much that I learned from being her Mom. She also found much in the medical industry that was wrong and appalling to say the least; she found some wonderful things on her own and knew well that the influences of others often interfere with what you want. Turning to alternative treatments when doctors said – goodbye, – you are hopeless – she found hidden from the public eye there were hopeful solutions and did them. I am glad to have supported her in all her decisions no matter what they were, that is important, it is afterall YOUR life not ours to decide. I watched her cancer die and watched her filled with joy. I also watched her as the late effects of the chemo killed her. But that did not block out that vision of her joy. She started Jesicha’s Hope before she died, it means – hope to you from Jesicha – she wanted to give to others what she could not find for herself. Now it is a legacy but through her information and her cancer story she is saving lives and that is exactly what was her.

    I hope your story touches others too; people need to know it is all about you. This is your life story, you are the director. Those around you should support and love you, and cherish all that is about you.

  9. hi, my 24 yr old daughter who had just had a reoccurrence in her lymph nodes just asked me to please NOT tell everyone that she is involved with that she has Breast cancer. She said it changes everything as people don’t treat her the same, she is no longer K but she is cancer girl.
    It is so hard to understand her world, though I am very intimately involved as her mom and main caregiver. She is beautiful, full of life and love. Look at her- there is no signs of any cancer, she dances for hours, runs miles, laughs and bitches.
    She refuses chemo this go round and the world responded with anger at her and me. NO doctor has said you can do this, why are you being so irresponsible, we need a family intervention, this is insane…. and she wrote her friends and family a reply that was heart wrenching for me. She spoke of her life, her feelings, her dreams and her right to make a path that she was comfortable with. She spoke of the pain, laying on the cold hard floor trying to find relief.. the constant insult of the IVs, and needles forever sucking her blood, …..
    She has owned her cancer, she has confronted the universe with her right to make her decisions about her existence. Oh it is so important to speak your heart because no one, not you mom, not your sister or lover can understand the pain and fear. Thank you. pam

    • Oh Pam, I feel for you and your daughter. I was 34 when diagnosed which isyoung although not as young as your daughter. I totally agree that she is incredibly courageous in owning her own life and I believe she will fare better in her journey to health by doing so. It is such a roller coaster and If you can feel a sense of control by making your own decisions it makes all the difference. Sending both loads of love, positive energy and gentle hugs x

  10. From one Metster to another. Thank you for verbalising what I find so difficult to explain to others let alone myself. While I know this will help so many supporters gain better understanding, for me, the value in what you have shared is that I have a better understanding of myself. Thank you for your precious gift. Sally x

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