I quit (the clinical trial)

After two months of the roller coaster ride that was the clinical trial, I broke down and called my clinical nurse on Friday morning. I can’t walk, I said. My feet are bright red and tender and my big toes are starting to turn gray. The skin is peeling off in sheets and it hurts to put one foot in front of the other. I’m back in fuzzy slippers and doing my best to cope, but it’s tough. It’s really tough.

I had to call her back at 10 am, telling her that it was worse. I couldn’t stand without pain. I took my pain pills and lay in bed all day, distraught at the probability that I couldn’t travel to my conference the next day. Stop taking the pills, she said. The oncologist will call you Monday.

So I did. I packed and faxed and prepared for the community meeting that I hold at this conference each year, for all the women in planetary science. We have over 110 women pre-registered this year, and we’re adding space so more can come. I prepped for my panels at the Undergraduate Research Conference on Sunday, and was happy that I could go.

I went. The undergraduate panels went really fantastically well, with the undergrads asking post-grad questions, worried about the compatability of family life and a research career. I tried to reassure them, but not lie. It’s hard to dedicate yourself completely to both, I said, and there are no easy answers.

Today my oncologist called. We agreed to take me out of the trial, to allow my feet and hands (It was too painful to type!) to heal, and to let me get stronger to continue fighting. It’s a sad day on the one hand, but a happy day on the other.

and I’m learning to do my work as best I can. I moderated the panel sitting down, not standing as the others had. I accepted help running the mic to the audience members (thank you, C, for coming to my rescue!). I am spending half the conference upstairs, lying down, resting, and conserving my strength for my meeting tomorrow. and I took a wheelchair through the airports, sacrificing my pride for the sake of my feet, and for being able to go at all.

As I told the undergraduates, “Figure out what you most love about your work in science, and then find a way to make it happen.”

I love being at this meeting, as I have been for the last 16 years, encouraging my colleagues who stayed in research where I could not, and mentoring those at the beginning of their careers, helping them see options where they may see only closed doors. There is always a way to make your goals happen, even if sometimes the answers are hard to see.

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29 Responses to I quit (the clinical trial)

  1. Stella says:

    Susan – we can only work with what we’re given. Glad you aren’t feeling the need to martyr yourself for the cause. Hope you feel well enough to attend tomorrow. Prayers for you

  2. You are a constant inspiration to so many people Susan. The lives that you have changed because of your commitment to your work, your family, your spirit, yourself…

    It’s no wonder you need to rest.

    Here with you as always my friend.

  3. Colleen says:

    Susan — I am so grateful that you were able to go to the conference. It sounds wonderful, and I know that you will really help and inspire all those women who are trying to follow in the path you helped to forge — melding a career in physics with family life. I’m sorry that you have had to stop the trial, but glad that you did — the side effects sound awful, and one would never know by the smile on your face. Have a great time at the conference. See you when you get back.

  4. Akshata says:

    wow! all i can say is you inspire me. really.
    sending you love and prayers, all the way from India.

  5. Niksmom says:

    Yes, I feel the same as Akshata. You inspire me. Always. Sending so much love, support, respect.

  6. Bon says:

    i hate that you are in that much pain.

    i am sorry that you weren’t able to continue with the trial.

    i am glad that you didn’t continue with the trial.

    i love that you went to the conference anyway, and i think your message will sing loud and clear to those young women who need to hear it, in all its complexity. your love for what you do shines through, in all your perseverance, in all that you share with all of us.

  7. J.J. says:

    I’m sorry for the pain. And just know that you always inspire me. You do more at your “worst” than I do at my current “mediocre” state.

    I always believe that when a door closes, God opens a window, so if this clinical trial is not for you, then something else will come your way. In the meantime, keep thinking about swimsuit season. Hopefully by then your tootsies will feel great and you’ll be laughing it up with your kiddos.

  8. Jane Gassner says:

    Susan,
    I echo those who applaud both your attending the conference and bailing on the trial. I’m thinking good thoughts….

  9. vicki says:

    Sending you many good thoughts to arm you in your battle to win yet again. Came via learning about you from Alice at The Magpie Files and the sight of morning

  10. Juanita says:

    You inspire me, so very much, and although we’ve never met, I have such fierce love for you. Sending all my hugs and snuggles and hope.

  11. Sue Farrell says:

    Those life decisions are so difficult to make. You look around and try best to pick and choose what is right for you and those you love–those that are dependent on you. For now, you made the correct decision. Next week or month you may have to make more decisions, but in the mean time enjoy the conference, the sunrise and the sunset. God Bless.

  12. Catherine says:

    Hope you are feeling better already, and I hope the shorter-than-planned course of drugs has a longer, bigger, more positive impact than anyone imagined it might.

  13. I’m sorry the trial did not go the way you wanted it to, but we all know that whatever other ways there to fight, you’ll be there, gloves on, ready to go. And we’ll be cheering for you.

  14. Amanda says:

    You have a great team, an incredible family and an amazing spirit,

  15. I’m sorry the trial didn’t work out for you. I’m glad you stopped and you have such great support from your oncologist and your family and your friends. I’m sending lots of love, hugs and applause.

  16. karen says:

    Susan, I’m sorry to hear this; however I hope you are moving on to a new option. I’m not qualified to offer advice to anyone in your situation, so I won’t.
    Your recent post, just a couple of days ago, seemed to say that you were doing relatively well on the current trial – ice-skating, etc.
    However, it now seems that treatment is very unpredictable.
    You know what is best for you and your family.
    Best wishes to you and your family,
    Karen Lee

  17. Susan, you are NO quitter. You are fighting your fight, in the way that is best for you and your family. You just “keep on keepin’ on”, and I will continue to cheer from the sidelines!! You are so inspiring, on so many levels.

    Love to you, as always, CGF xoxo

  18. cm says:

    I keep up with the WiPS blog, but have not checked this one in some time. So some of this you might get quite often. But I was at the networking breakfast and just read this post this evening, and felt compelled to post.

    My grandmother has cancer (a different type) and was on a drug giving her similar side effects to the ones you describe. Perhaps not the same drug or even the same severity, but knowing what you’re going through after watching you this morning — I am so completely inspired.

    You had such energy and positivity and it radiated in the room because of you. I never would have guessed that just days earlier, you were under such physical (and likely mental) stress. You are such an asset to the community and I cannot say enough how much you personally inspire me and are appreciated.

    Keep up the great work in the community and keep fighting. I wish you all the best in your health, your career, and your family.

  19. Richard Foster says:

    Only you know when to call a halt, and there are always other trials. I saw a trial being run at Washington University St Louis Mo with bee venom and nonoparticals they call it nanobees. It looks really promising and lacks the side effects of conventional chemotherapy.
    Love & prayers from Mississippi.

  20. Lisa Stone says:

    You know best. You do. Bravo.

  21. Jenny says:

    You need to do what is right for you – quitting the trial, chairing a discussion, do it all your way. Hopefully the next treatment to come along won’t be quite as tough on your body. hugs as always

  22. deb says:

    You so obviously love your work, you are blessed to be able to do the work you love.

    I hope the pain subsides quickly. Take care.

  23. Ruthie from California says:

    Praying for you.
    Ruthie in Cali

  24. Stimey says:

    I’ve been watching your tweets from the conference roll by over the past couple of days and I’ve loved seeing your excitement. I’m so glad you found a way to make it work for you. Because I think that’s the thing about life, you take what you have and you make it work for you and your family. You do that maybe better than anyone I know.

    I have my fingers crossed for whatever comes next with your health. Much love to you.

  25. Kristen says:

    I’m so so SO glad you made it to the conference. When you complained on twitter that tweetdeck had posted everything to your personal twitter account by accident, I laughed out loud. I had been enjoying your excitement and your commentary.

    Much love to you as you recover, heal and the pain subsides. And then move on to the next potential treatment.

  26. Elena says:

    When I see you are four time cancer survivor, I think my mom which fight cancer for the second time, now thyroid cancer, I think God is good and great.

  27. jane says:

    I was also at the Women in Planetary Science networking breakfast on Tuesday morning and was recalling it was at last year’s conference – the day before the breakfast, that I met you face-to-face for the first time!

    At the end of this years breakfast, all the womeplanetsci women came to the front of the room and had a group picture taken. It was an electric moment and without your drive and passion over all these years, it might not have happened.

    You are just so darn inspiring – thanks for working through your side effects, and sharing YOU with us!

  28. justenjoyhim says:

    I don’t know why I didn’t see this before. What difficult decisions. I’m sorry you had to quit the trial, but totally understand. I support you and love you.

  29. [...] the clinical trial We stopped the clinical trial.  I believe I mentioned that before, but since then I’ve seen my oncologist and we’ve agreed to quit the trial completely, [...]

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