Instead

You’re right.  I shouldn’t have just griped in my last post.  I do know that people mean well, and I do appreciate it more than anything when they talk TO me, rather than looking at me sideways and slinking down the hall in another direction.  The question yesterday was just stunningly bad, in a perhaps-not-obvious kind of way.  I think my issue with it really is that it shows that the questioner’s curiousity has at least momentarily triumphed over a concern for the survivor’s wellbeing.

Yes, chemo is mysterious.  Most people do not realize that its purpose is to kill cells as they replicate — thereby striking the fastest-dividing cancer cells a hair faster than the also fast-dividing hair follicles, white blood cells, bone marrow, fingernails, and, then, the more pedestrian cells in the body (like, say, the brain cells, and those that reline the stomach and small intestine).  We are lucky as a society to have found these drugs that give us a chance; but it is not a panacea, and it is a difficult process, this trying to stay one step ahead of it.

Yes, my diagnosis is shocking.  My meeting last week was with the greybeards of my community (standard, if perhaps not flattering, lingo in my field: it simply means those who have been around long enough to know better.  And yes, they are almost always of the gender with a proclivity to growing beards on occasion).  I’ve always been a bit of an oddity around those parts, being young and female, and infected with this tendency to excitement as I encourage, lead groups, develop or implement policy.  So I know that it caught some people off guard.

But all I’m asking is a little restraint, a little of letting sensitivity triumph over scientific curiousity.

Such as my encounter with a woman closer to my age, who talked to me throughout a break about blogging, second life, and educational outreach possibilities, and only at the end leaned in to tell me that she had done the Avon walk last spring and raised $3300. 

Such as my friends Susan K (who reads and comments here regularly) and SB, who were a great source of support for me throughout the meeting, and asked if I was holding up when I looked down.

Such as my younger colleagues who sat down with me at lunch, talked about the hot issues at work, animatedly tossed out solutions and then obstacles, and then, when I started to pass out at the lunch table, picked up my bags and helped me walk across the room, and then farther to a spot where WonderDaddy could come and get me.

Such as my older retired colleagues who bent my ear about review policies and current issues and the wonders of working as a consultant, and then whispered that their wives, their beloved wives, were also survivors, and it is still hard, five (or twenty, or thirty-nine) years later.  And then offered to sit down while we finished talking, so I could get a little rest.

Such as the young families in the elevators throughout the weekend, who chatted me up about where to take the kids for adventure, helping their little ones learn to talk to someone who looks different without making them feel different.

Such as all the men who were startled to see me looking so different but sounding the same, who kept talking to me professionally at breaks and poster sessions, allowing me to keep my dignity.

The ones who never brought up the cancer.  The ones who brought it up sensitively, asking, “Were you diagnosed with cancer along the way?” or telling me, unprompted, about their wives (mothers, aunts, friends) who have fought this beast and survived.

The ones who gave me some time away from the cancer.

The ones who told me that they were sorry to hear about my cancer.

The ones who reached out to pat my back.

The ones who understood when I couldn’t shake hands.

The ones who told me that they knew I’d beat it.

The ones who told me that they’d keep me in their prayers.

The ones who didn’t say anything at all.

There were plenty of wonderful people.  There were plenty of good things that happened last week.  Listing them all almost makes me forget about the others, the ones who stared, who were dumbstruck, who asked repeatedly about my prognosis, about my options, and about whether or not the chemo is working.  Whether I’m still dying.  Almost.  I can almost forget.  I want to forget.

Writing helps me forget the bad parts and remember the good parts.  Thanks for listening today.

31 Responses to Instead

  1. This post is a lovely model for how to focus on the good when the bad or unpleasant just jumps out and rattles us. The rattler loses its power, and is outnumbered by better examples of simply how to be.

  2. This should be a primer for anyone who knows someone with cancer (and we all do) on how to communicate with and support that person in a sensitive way.

    Seriously.

  3. MamaDB says:

    I think you had every right to react to the scenario the way you did. You didn’t haul out and slap her for her insensitivity. That’s a good day!

    Anyway, you are a beautiful person to focus on the positive and I love this post.

    Keep on keeping on.

    Love,
    MamaDB

  4. Alice C says:

    Thank you for writing all that. I hope that I would never be grossly insensitive but it is good to have a perspective on how to approach the topic without causing distress. I agree with SM that this should be a primer.

  5. Susan K says:

    And remember that maybe, just maybe, what didn’t get a chance to be said was, “…. because if it is not, my sister tried XYZ when HER chemo didn’t do much good and now she is 7 years cancer free”.

    I’m glad that you had all those good things to list. And I am glad that you came.

  6. canape says:

    As long as I’ve known you, I still get surprised at how different our worlds are. I see now, how those questions, coming from other scientists, feel like research, not compassion and inquiries into your well being.

  7. lauren says:

    hi i found your blog through another blog.
    i’m keeping you in my thoughts.
    the pictures of your children at the top of the page are adorable🙂

  8. Jen says:

    It is so hard. Since you know in your brain people “mean well” it is hard to be rude right back. But that’s all I ever want to do! I had all kinda of smart a$$ responses for my mom when she battled IBC. The only good thing to say is “This sucks and I am so sorry you are going through it. Let me buy you a pizza.”

    I also got sick of every “so and so ate grapefruit /stood on her head/prayed to Lucille Ball everyday and her cancer went away!” Ugh.

    You are still in my prayers. IBC sucks.

    Please if you get a chance, I would love to add your button to my blog. I do not know how. I tell everyone and their mother about IBC.

  9. rimarama says:

    We humans are silly, fumbling creatures, but most of us mean well.

    I am sorry that you had to endure that question, but I am so glad that you posted what you did. I am speaking only for myself, but I think that most everyone wants to reach out, everyone means well. And sometimes, in a desperate attempt to articulate this, we blurt out something like what your colleage said to you. Because we want so badly for it to be, indeed, working . . .

  10. deb says:

    I want to say something but don’t know what it is. I’m crying for my own family now and I guess I don’t want your family to go through this, not for a long time.

    Be strong, get better.

  11. Tamara Cosby says:

    Not sure you know this but you are teaching those of us out there who DON’T know what to say…well, what to say. Thank you for sharing your heart. We are praying for you in TN and pray you know how special you are!! In Him, tamara

  12. BetteJo says:

    Totally. Thanks for sharing and teaching us. Your generosity of spirit is overwhelming.

  13. Amy says:

    Gripe all you want. Lord knows I’ve griped more about less… You are so strong.

  14. Thank-you for this post, for showing us what to say. When my MIL first was diagnosed with cancer, my husband would call and say “how are you?” Of course he did, he was concerned. But she had no good answer for her son. She felt like shit, she was scared.

    I didn’t know what to say, so I just rambled on about me. I was afraid I seemed insensitive. Later, she told me she was happy to not have to think about cancer for a bit and just listen to me talk normally.

    I try to remember that.

  15. amanda says:

    Oh, well, there are going to be good and bad days, for those with cancer and without. I can overlook a little negativity on your blog if you can on mine, it’s part of the give and take, no? We all want it to work and we all want to say the right thing.

    Hugs.

  16. Mrs. Chicken says:

    Oh whymommy. You are a pillar of strength. I wish I was there to sit and talk and look directly in your eyes, and talk to you, and not your cancer. Thinking of you, and I remain in awe of your strength. Keep kicking cancer’s a**, one a**h*le at a time.

  17. Leigh says:

    Just wanted to let you know you’re in my prayers and to thank you for visiting my blog. You are such a wonderful person – I know we’ve never met, but I just know – and you are so honest. We all need to know – we all need someone to be honest about this because we all know someone who needs us to understand the things you share with us.

  18. Thank you for this, whymommy. I’m so glad I’m not the only one feeling this way, so bewildered at the cluelessness of Joe Public when you’ve been through (or are going through) a trial. Just recently a passerby said to me, after I explained that my baby son had been traumatically premature at 2 pounds: “WOW! That’s great! I mean, it must have been so easy, you know, to push him out!”

    So when you’re struck with a desire to simultaneously walk away, cry, say nothing, say everything, knee the effer in the groin, and laugh at Joe P’s stupidity, just know you’ve got company. Company of a totally different flavour but company nonetheless.

    I admire you so very much for how you’re facing this, and I think of you every day. I’d never ask you if it’s working. I don’t need to – I just look at you, and read your words, and see that YOU are working. Beautifully, gracefully, bravely. Even when it gets messy. More so. Love to you.

  19. Ally says:

    I think it must be especially difficult in your field, surrounded by giant brains, full of curiosity. It’s nice to hear that there were plenty more who showed compassion, kindness, and respect.

  20. Through everything– I pray that you are able to remember how very, very deeply you are loved.

    In my heart, I know you are a Survivor. You are coming through this, Whymommy. And as well as Kicking Ass, you’re teaching us SO much along the way.

    xo CGF

  21. motherofbun says:

    WhyMommy I keep trying to think of something profound to say. But I’m at a loss. So I’ll just say what’s in my heart. You are a beautiful soul. And I feel so grateful that you are sharing this journey — the good and the bad and everything in between — with all of us.

  22. None of us (well, many of us) cannot possibly know what you’re going through, how you’re feeling, what you need from us – and then you go and learn us with a post like this. You are so brave and smart and cool.

  23. magnetobold says:

    Oh. When I read this post my heart sunk to my knees. I hope what I said in the previous post didn’t hurt you WM….. I would NEVER accuse you of griping. Heck, I have the flu and I have been whining constantly to anyone who listens. You are strong and amazing and I know that if I was in your shoes (and mighty fabulous ones they are too🙂 ) I would not be as strong and willing to share as you. I would go to bed and not ever want to leave.
    Please know WM that I only asked you what to say to make sure that I never make anyone feel the way that woman made you feel, I would like to think I wouldn’t be as insensitive as that, and to make sure that I can make someones day a little brighter or at least not contribute to their pain.
    I am sorry.

    Kelley

  24. Nancy says:

    I know that crowd of which you speak, with its blunt and scientific-minded characters (like your former colleague). Sometimes their lack of social graces is maddening.

    I am glad you do have many wonderful friends and colleagues who do know better, however.

  25. WorksForMom says:

    Still listening and admiring you WhyMommy. You gripe? When pigs fly.

  26. Becky says:

    Every day I read this blog, and every day I am amazed at your grace and poise as you confront this beast and all of its complications head on. You are not merely a survivor. You and all who have fought and are fighting this beast are PREVAILERS. And your courage is an inspiration.

  27. whymommy says:

    You are all so sweet. And you have never said anything to hurt me. I promise. Ever. I just had a hurt, and I had to let it out in the last post. To let it go. To release it to the winds. Thanks for understanding.

    Kate — what a hand-to-forehead moment. I know what I hear isn’t half, or a third, or a tenth, of the insensitivities and horror story inquiries that pregnant and new moms, and particularly those who have suffered such a profound loss as yours, endure every day. And the hurt must be excrutiating, keening, as you have to go on through life without the love-baby that you deserve, missing him every day, but without public means to express that loss. I won’t go on, but please know that i think of you every day, and all three of your baby boys.

    Kelly — don’t give it another thought. Cause I didn’t. I promise. But I did need to write more to explain what happened. It wasn’t just simply not thinking, I think — it was this scientific curiosity overcoming human instincts that got me. That’s what I wanted to say, and you helped me say it better.

    Amanda — I hope you’re feeling better!

    Everyone — thanks. Thanks for not running to the hills after yesterday’s post. Every now and then I have to say something. And this was it.

  28. twithhoney says:

    Getting this type of stuff out of my brain… off my chest (oh, yes. bad pun intended.) is exactly why I started my blog. I’ve had a lot less sleepless nights.

    Glad to hear your feeling better. I’m still visiting your blog. Still reading. Good days and bad. That’s what Team Whymommy is for.

  29. NoRegrets says:

    What tremendous strength to go out and reach out to that community, and glad that there were many positive things to come out of it. And that you gave yourself time to realize those things.

  30. Spacemom says:

    WM-

    It’s okay to b*tch and gripe when people upset you. It is hard to go forth in life with cancer.

    And it is good when people just treat you like a PERSON.

    Please know that you are thought of everyday. I read every post. Good days and the ones where you want to hide from the world….

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