That’s it. Enough with this cancer stuff.

I got sucked in.

and without realizing it, I got stuck in the identity of “cancer patient”. Not astrophysicist. Not change agent. Not super(busy) mom. Not friend, or equal partnered-spouse.

It was an accident. And it was a mistake.

It was a mistake that (along with sky-high blood pressure and racing heartbeat from my trial medication) landed me in the hospital two weeks ago, and that has caused me no end of terrible thoughts as I suffered as my body got used to new heavy-duty trial medication and what turned out to be a kidney infection (or infected kidney stone?) on top of that. I was in bed for almost a week this time, on top of similar trouble just two weeks ago, and it’s not a good place for my head to be. And when even doctors shake their heads sadly at your patient history, it just reinforces that, and I’ve seen a few lately.

I thought, I honestly thought, that I was dying.

But I’m not. Well, no more so than we all are, said my oncologist just now, and I needed to hear that. I needed to hear that a lot.

Yes, I have Stage IV cancer. Yes, again, the fourth cancer in less than four years. Yes, it sucks. Yes, my next PET scan is scheduled for April, and we may see bad things. But we may see GOOD things. There is real hope that this will work, and I have to cling to that in more than a pretty little poetic way.

But more than that, I need to forget about it sometimes too. I need to spend more mornings doing things like making homemade frosting with my kids, and volunteering at their school. I need to throw myself into the work I love, and remember why I love science. I need to be my husband’s dinner partner again, instead of the woman he has to bring things to because she’s too weak to get out of the damn bed.

And to do that, I need to leave this cancer identity here, at the hospital, today.

And I need your help. In my toddler planet email box are nearly 700 emails. Some are brimming with excitement, full of ideas for projects that people want me to help them with, to be the face of cancer patients, to advocate, to raise money, and I need to say no. Some are ideas that I started, like blogging my clinical trial experience for ACS or the lymphedema sleeve connection that I made and asked you to help me publicize, but that then got out of control. Some are people wanting to do things for me, to send me things, to take my picture, to tell me about Cleaning for a Reason that will clean my house, to help. To help. Some people just want to visit the sick, and we are told explicitly to do that in the Bible and in faith traditions, and it’s lovely and wonderful and generous and

I can’t take it.

I don’t know how to say no to kindness, but I need to learn.

Because I need to get out of bed, push myself a little more each day, and find those other parts of ME again, to make this life that I’m fighting so hard for really be worth it again.

I’m taking extraordinary measures to live.

It needs to be MY life again. Not that of a cancer patient, living with either a fear or an expectation of death.

To sum up (and I’m sorry to ramble), I asked my oncologist today to tell me, straight out, whether I was dying or not. She said not now, and that there are more chemotherapy drugs to try if the trial drugs don’t work. We need to try this. She wouldn’t do this if she felt it was time. And there is hope of getting better.

After all that, I had still had trouble understanding her words, given how I feel, so I asked her, in mom-terms: So, should I sign the kids up for swimming lessons or call hospice? She looked me straight in the eyes, put her hand on mine, and said

Swimming lessons. No question.

But first, friends, I have some work to do in that email box. I’ve had trouble finding the words, but I think I have them now: “No, thank you.”

If you get that email this week? I love you. I love that you were so thoughtful. I love that you care about me. But I can’t act like a patient anymore, unless I want to keep being one. And I don’t. I want to take my kids to swimming lessons!

Edited to add: My labs just came back. Neutropenic. (My white blood cell count is too low.). No treatment this week. No crowds. Lots and lots of washing of hands for me and everyone around me. Did this cause the weakness that made me so afraid that my body was shutting down? I dunno, but it surely didn’t help.

66 Responses to That’s it. Enough with this cancer stuff.

  1. clifford says:

    Rock on, Susan. THIS is what daddy likey.

  2. Laura says:

    Amen, Susan!

  3. Spacemom says:

    Go to the swimming, look for photos of the aurorae, play, and rest. You are, above all, Susan, the person.
    Love ya!

  4. JJ says:

    I’ll be laughing now every time I put on a bathing suit, instead of shuddering. B/c there’s joy in putting one on, right? Not that you have the belly flab and thunder thighs I do…

    May I recommend that in addition to signing up for lessons you go stock up on some super cool pool toys and some adorable flip flops? We personally like the “toypedo” line of pool missiles.

  5. Amanda says:

    You are so wise.

  6. TwoBusy says:

    “Swimming lessons” are the two greatest goddamned words I’ve heard in a long time.

  7. Stacey says:

    Thanks so much for sharing your new perspective!!

    When you wrote a few weeks ago that you told “those” guys, “It’s not funny. I’m dying of cancer.” I wanted to say, “But you’re *not* dying of cancer. You’re *living* with cancer.”

    Just like your oncologist said, we’ve all got a terminal illness. No one gets to live forever. You just know the thing that *may* kill you. But it may *not*.

    And in the meantime you get to LIVE – and make homemade frosting, and splash in the pool with your sweet kids, and eat dinner with your husband, and write science articles, and enjoy a million other things that make life so sweet.

    So thank you, again, for sharing your story and reminding us what’s *really* important. Big love, s

  8. Carolynyong says:

    Timothy just loved Matthew. Hope to see you again and have fun! We’re doing Tues at MLK 6:30-7 with the dad starting April 26th. Can’t wait!

  9. Lynne says:

    I thought of you when I heard the story about the day-time comet earlier this week-I wondered what you thought about it.

  10. Jenny says:

    Love this post. Cancer patient is as much a label we give ourselves as others give it to us. We can’t live our lives with that being our primary identity. I am so glad you’ve had that conversation with your oncologists and that you are in a better place – yes, I know you because of IBC but I admire you for being so much more.

  11. Becky says:

    You GO girl!

  12. Loran says:

    You GO girl!!!!!!

  13. anth says:

    You are so brave. Take a lesson from kids – they are the best at saying “no”!

  14. Robin (noteverstill) says:

    Kick ass, Susan!!

  15. Sunday says:

    Please, by all means, hit the delete button on the email I sent you a month ago. Don’t even read it. Just don’t.

    You are truly an inspiration. I love you for that and so many many other things!

  16. Kami says:

    Mind over matter. Onward! BTW–you Rock!

  17. Colleen says:

    Darn it, Susan. You made me cry AGAIN! With Joy. You are awesome. Have fun at the pool!

  18. hugs. many, many hugs.

  19. Sarah says:

    That is wonderful news.

  20. jodifur says:

    You know what’s funny, I was very close to you this morning and almost called but I thought “I don’t want to disturb her.”

    I don’t think of you as a patient, I think of you as my friend, Susan. And I wouldn’t drop by at the last minute of any of my friends, sick or not.

  21. I’m so glad that you asked your oncologist and let us know. It was worrying!

    And this must be a sign – right around the time you were posting this, I was chaperoning a field trip to the national postal museum, fondly recalling your early posts when you blogged so much about fun things to do in DC! I even tweeted @ you!!

    Maybe it’s a sign you should head into DC with the kids as soon as you’re feeling better!

    And the bikini I proposed? A possibility now?

  22. Amen! I vote for email backruptcy, just empty the whole damn inbox! And we’re having coffee. Name the time. I’ll bring the bathing suit catalogs.

  23. C. Mom says:

    I love you so much! It is funny bc a long time ago, I refused to be the sick person that everyone saw me as…and I had to work on it being ok to say yes sometimes. You rock…and whether you delete those emails or say no thank you, your friends will be behind you in whatever way you need (even if it means keeping our thoughts to ourselves)🙂 this is your time and it should be all about you!xo

  24. Elaine says:

    I love that your choosing to LIVE, we all need to learn from that no matter our circumstances. What a wonderful post for you to write and feel. Love your honesty with everyone, including yourself. xo

  25. Great words to read!

    We define who we are. Not our illnesses or our roles in others lives.

  26. *cheering you on as you say “no thank you” to your inbox!!*

  27. marty says:

    These are the words we were searching for yesterday. I’m glad you talked to her about it and got the go ahead to get going.

    I’m even more glad about her answer.

    I’m not buying C any cards anytime soon, dadgummit.

  28. annie says:

    Bravo Susan! When you end up on an ongoing treatment and you don’t have an end point – cancer as a chronic illness – you have to find that balance. Cancer has to find it’s way into the background as we go on enjoying the rest of life. And living it!! It’s a hard balance but it feels good!

  29. Amy says:

    Brilliant. Saying “no, thank you” is so difficult. Kudos to you for finding the strength to do it. Cheering you on!

  30. Blue Morpho says:

    You are very wise. I know some folks choose to advocate for and become the face of a disease or disorder – and that makes them stronger. And others feel the pressure to step up, even knowing its isn’t right for them. Or maybe it was right at one time, and now things have changed. I know that I do not want focus on disorders and illnesses, they are not ‘me’. They are a part of my life, but me is different. And me is focused on living. Best wishes as you continue with your life!

  31. In the eternal words of Ali G, “Respect Yo.”
    Love it.
    I know there are more than a few emails from me and I don’t take “delete” personally so free yourself my friend!

    Also, I could totally make fun of you if you are getting sick and tired of all the niceness. I’m pretty good at that. Actually, so is Jodifur – she makes fun of me all the time.

    There are definitely two sides – the one where accepting help for some things allows you to enjoy all the other stuff (that’s the side that motivates all us ‘helpers).

    Then there is the side where you just need to say no thank you and feel more like a ‘participant’ in this crazy thing we call LIFE.

    And boy, are you alive!

  32. Yes, absolutely!! There is so much life in you, Susan. And, while we are honoured to be a small part of your journey, we want you to feel free to do what is best for you and your family. Loved Ones and Happiness first!! Bleep that in-box, and when you get a chance, we’d love to hear some more about all the wonderful things you do.

    xoxoxo CGF

  33. elesha says:

    Yes yes yes I have been waiting for this post!!!
    It was clear for a while now you have let yourself go to a pretty dark place. And sometimes you just have to go “there” but you have done it and now its time to live your life every day just like you always have. Im so glad your oncologist said all this. You really needed it. Welcome backxx

  34. Catherine says:

    Susan – I sent you a couple of emails, and you don’t know me. I hope you don’t spend time responding. And I hope I didn’t say anything hurtful or too weird….

    I keep coming back to read your blog because I’ve come to care about you. I’m stunned that you’ve had so much to deal with because of the cancer, and I’m praying (in my own way) for you. I love the way you write about mothering and about your sons. I admire your trailblazing and outspokenness about women in science, and your activism on cancer issues.

    I’ve wondered whether it feels like a burden to you sometimes, to share so much with so many strangers. It sounds like you’ve found a great new perspective. And it sounds like rest is on your agenda again; I hope that isn’t too hard for you. I remember reading an article some years ago about how under-rated “rest” is – how healing it is. I’ve had some illness/rest experience myself, and I’m a believer in the restorative powers of rest.

    All best wishes for the here and now and for swimming this summer and on and on….

  35. Andrea says:

    Yep, I’m gunna say it:

    I told you so, I told you so, I told you so… a few times, both here & in a private email.

    You are one stubborn woman, do you know that? Maybe that comes with being so highly intelligent, I dunno. Do highly intelligent people always think they know it all? I suspect so. Do highly intelligent people have to arrive at a conclusion & call it their own, when in fact others have been telling them the same thing for awhile? I suspect so.

    Let go of it, woman!! Let others fight the battle for you. Take off your battle garb & do happy things. “Let go & let God”.

    It’s probably a good thing I’m not your neighbor or a member of your play group buddies. You’d get no cushy treatment from me and no particular special sympathy… and they’d probably TP my house because of it. :-DD

    I’m not a member of your “fan club” so I don’t think every word out of your mouth (via your keyboard) is brilliant or particularly wise or anything else. I think you’re quite self-centered & love to be the main attraction, probably both online & in person. You have a lot of pride & that’s not particularly appealing to me.

    But I’ve cared about you and about your story ever since learning of both. I’ve prayed for you & I’ve tried to tell you some things out of MY OWN life’s wisdom… much of which you probably rejected at the time but have now embraced. I’m glad. You’re at the place that I’ve encouraged you to travel towards for months now.

    I was a homeschooling mom for 19 years & developed a type of military-style attitude, from what I’ve been told. What-ev-ah!! All I know is… whatever the future holds, the earth isn’t going to stop spinning on its axis because of it. Whatever the future holds for you… for me… for any one of us… our families aren’t going to melt into a puddle of tears & stay that way forevermore, just because we’re not here. WE have to stop thinking we’re so damn important that the earth can’t exist without our presence. Cos I got news for ya, darlin’… the earth existed quite well before you & I came along… and it’s going to exist quite fine after we’re both gone. Grab the brass ring now… cos it’s going to be the next generation’s turn to do it soon enough.

    Now stop being so melodramatic all the time & take your kids to swimming lessons, would ya, puh-leez???!!!❤❤

    I'm praying for ya, as so many others are… now git on with yer life! Scat!!!
    🙂

    ~Andrea

    • elesha says:

      Im sort of shocked buy this response. But Maybe your a friend and I missing something here. Suzanne is going though something huge right now and is allowed to be scared. This is “HER” blog where she shares how she is feeling. That is not self centred. That is her right.
      I do not agree with people who float threw life thinking they can say what ever they want to people with out a care for how they feel . As if your words a law.
      I think you are self centred thinking you can comment on how someone else should or should not be feeling on anything let alone something like this.

      Perhaps you should find some compassion and get over yourself.
      Suzanne you are amazing and whatever you feel and write is a privilege to read. Thank You for letting us “in”

    • marty says:

      Wow. It’s a good thing you sent her all that advice because you are obviously the smartest person in the universe. /sarcasm

      Perhaps you didn’t mean it to, but your comment comes across as though you are a complete jackass.

      Susan is neither self centered or melodramatic. It’s a shame you don’t really know her and never will really know her. It’s your loss.

      You might consider ceasing all of this “encouragement” for Susan and moving on. She’ll never ask you to do it, but I’m pretty sure the rest of her readers would concur.

      • elesha says:

        I was begining to think I was the only one who saw this post.

      • Karen G says:

        To reply to elesha, marty, and Susan – I absolutely concur. I found the above post rather distressing, and wondered what that post was about. Sorry, just didn’t get the point.

        • It’s not the first — she’s right, she has told me this several times. My email box is a swirl of well-meaning people with high emotions. I do my best with it. I help those who need to find resources, I listen to those who need to talk about their fears of diagnosis, and I support those battling along beside me. I listen to those trying to give advice. But it doesn’t always fit.

        • Karen G says:

          Susan, thanks. I hope you realize that my earlier comment was wrt to a comment – which I imagine was well-intentioned – and not your *original* blog post.
          In any case, I really appreciate what you had to say! And, I think we can all learn to say ‘no’, or ‘here is what I can, and cannot, do’.
          Also, I cannot imagine what your e-mail must look like. It must be even worse than mine, which could use some attention. 🙂
          Take care,
          Karen G

  36. Lynne says:

    I thought about you when I heard about the daytime comet. I wondered what you thought about it.

  37. Susan, ultimately you need to be kind to yourself. Forget all the requests–people understand. It’s time for you to be selfish rather than selfless and don’t feel guilty about it! Love from Australia xo

  38. Perspective is everything. I am so glad you are not letting your disease define you. Same thing for me with not letting my son’s autism define him. I admire your strength and wisdom. (Which, you know, doesn’t mean I expect or demand for you to always be strong and wise, and I admire you just as much on your wretched days, too.)

  39. Kristen says:

    So you are saying this week isn’t good for the Virginia Pie van? Next week, maybe. You should taste these cake truffles that are the latest creation. Holy geez, Cupcake Lady is out of control.

    Glad to hear the wonderful news. Bathing suit is waiting over here to help break in a new endless pool.

  40. Lahdeedah says:

    You are all kinds of genius, Susan🙂

  41. I myself have always been fond of “I would love to, but no.”

  42. Emily says:

    Here, use a few of these: no, no, no, no, no.

  43. Stephanie says:

    Wow, I’m glad you were able to articulate your questions to the oncologist, and I’m very glad to hear the answer.

    And you have articulated to us how your focus and needs are shifting, and what that means for the type of support you want (and don’t want). Bravo to you, I’m glad you have found your way to a more positive state of mind.

  44. NYFriend says:

    Yeah for swimming lessons! Wahoo!

    Totally understandable how the label snuck in, and totally understandable that you want to ditch it!!

    Happy swimsuit shopping for the boys!

  45. Laurie says:

    M beat me to it, but BRAVA! Sounds like spring is coming at just the right time. xo.

  46. Pink Kitchen says:

    I totally agree. Take this ball called Life, and run with it!

  47. A Different Andrea says:

    No is a great word to have in one’s vocabulary!

    This was a great post to read for so many reasons. Hope today and every day is a wonderful one for you.

  48. k8 says:

    No princess fights alone…….

    You. GO. Girl!!!!!!!!!!!

    Just keep swimming…….

    k8

  49. carosgram says:

    Way to go!

  50. magpie says:

    I think I’ll delete all the emails in my inbox today. Just for you. Except for the one you sent me the other day.🙂

    Should we start up a “Just Say No” campaign?

  51. NoR says:

    Sometime it has to be all about you.

  52. Saying “no” is very powerful. Go for it!

    FWIW, my husband was on Nexavar for a while and had really dramatic fatigue from it — crippling, actually (the drug was VERY effective in reducing his tumors though). One piece of info in favor of “side effect.”

    You are being MUCH better with your doctors than we were. You’ll have a much better life because of it.

    Bless you, dear. You are loved.

    • This is the missing piece. This is what I needed to hear. That perhaps it’s not my body shutting down, just reacting to the medication. THANK YOU, Supa Dupa! This gives me HOPE!

  53. Diana says:

    I am having a hard enough time dealing with my Stage 1 breast cancer, can’t imagine what emotions you must be going through. That being said, I attended a funeral yesterday of a man that died of Stage IV melanoma. He was diagnosed 31 years ago (at Stage IV)! He won the fight long enough to see his kids grow up and die an old man. There is hope, no matter what your diagnosis is.

  54. Elaine says:

    Randy Pausch has a well-publicized talk on time management. In it, he describes many ways to say “no” that I have really valued. Many apply to practices at work, but I’ve found that getting good at saying “no” at work has helped me say “no” elsewhere as well. Though sometimes not soon enough. We all struggle with that, right?

    Besides the “no” advice, he also has what I consider to be a nice piece of time management advice Draw a square and divide it into four quadrants. Label the columns “due soon” and “not due soon” and label the rows “important” and “not important”. Now fit everything into this matrix. Now cross off anything “not important”. His point is that doing something not important that is due soon is bad time management. Instead, you should choose “important and due soon” and then go to the “important and not due soon” box.

  55. Would love to meet you at the thrift store for summer clothes shopping for you and the fam. I draw the line at thrift store flip flops and swimsuits. Even I have my limits !

%d bloggers like this: