Starting a clinical trial … emotions

I’ve tried to write this post for several days now.  I know you’re never supposed to *admit* that in blogging, but well, there it is.   I just can’t decide how I feel about this.  I’m hopeful and worried and terrified all at once.  Is there a word for that?

Today’s the day.  Today we go down to the hospital, walk into the chemo ward, have blood drawn, and start the clinical trial.  I talked to the nurse working the study yesterday and confirmed that I was accepted into the clinical trial of Femara + Nexavar. 

I’m torn about what to do next.  Do you want to hear about what it’s like to be in a clinical trial?  Do you want to hear about the importance of research, and how wonderful and scary and hopeful it is to be a guinea pig all of a sudden, and how weird it is to be on the other side of the microscope?  I’ll write it if someone will read it, but I have to admit to you, I don’t have any idea what to expect.

Or sometimes how to even describe how I feel.  The emotions bubble up, one after the other, so fast that as soon as I grasp one, it escapes into the air and another one flits by to take its place.  Should I be this excited to be part of something so new and potentially life-saving?  Should I be terrified to start a drug combination that has never been tested for breast cancer before?  Can I even walk into the chemo ward calm and cool after all my days there, and all the emotion, and well, the *history* that you and I and it have together?  Or can I put all of that aside, meditate and write (this) and pray and walk in there calmly, with my head held high, ready to take what may come?

I’m always honest with you, my friends, and the truth is, I don’t know what to expect.  I don’t even know how I feel about it.  But I do know that I have to *act* confident, and *act* ready, and *act* calm, so that everyone agrees that I can start the trial, so that my husband will go off to work afterwards (it’s important today), and so that my children will go to school calmly, self-assured, and ready, not even knowing 

today’s the day.

My friend Jessica has done a wonderful thing – she had a rough interview with CNN last week and wasn’t happy with the results.  So she went online and told her side of the story — what she thought she was being interviewed about, and what she wanted other parents to hear.  In the process, she has shared some terrific lessons for others being interviewed, and I totally recommend you read it today while I’m at the hospital.  Oh, and comment.  To turn anger into goodness, she’s donating $1 per comment on that post to Crickett’s Answer for lymphedema sleeves.  I love that Jess, don’t you?

38 Responses to Starting a clinical trial … emotions

  1. Patti L. says:

    Much much love and hope to you, Susan. Pls continue to share your journey with us.

    PS/ I love that Jess, too. We are both so lucky to have her in our lives.

  2. Susan, we love your blogging because you are so honest, and your words well chosen. The words will come, and we will be here waiting to receive them. Congratulations on being accepted into the trial!

  3. Stimey says:

    You have taught me so much about cancer treatment and the women who go through it. I think having a journal of a clinical trial with the honest emotions behind it would be tremendously valuable. Of course, you need to take care of your emotions before everyone else’s, so do what feels comfortable for you. Good luck today!!

    Also, I do love that Jess.

  4. Laura Johnson says:

    Susan,

    I’m sending every positive vibe your way today. Please know that you are in my thoughts.

    And here’s a gentle, albeit large, hug: {{{{{{{{hug}}}}}}

    Laura

  5. Melissa says:

    Many hugs and good thoughts to you, on such an emotional day. I know that I, like many, will continue to read every word you choose to write, and respect those you choose not to share.

    Much love to you today and always.

  6. Elaine says:

    This is just incredible, Susan. Much love to you. And you’re incredible for doing everything you can on the outside to give your children the confidence they need to get through their day today. Those researchers wouldn’t be doing this trial if they didn’t have confidence that it was a good idea. Let’s hope this is the drug combo that kicks the cancer in your body to the curb for good. For you AND others who follow in your footsteps. Peace be with you.

  7. Bon says:

    i want to hear. whatever you want and need to tell.

    because you are our friend. and we care.

    and someday, some other of us will be in your shoes and your voice will be with us, holding our hand as we try to hold yours.

    courage.

  8. Gamermomma says:

    Hugs and luck. Tell your story however it needs you to tell it. The rest will fall into place.

  9. Amy says:

    I don’t think there are any “shoulds” – just feel what you feel, even when those emotions conflict. As for the blog, it’s not about what we wany – what do you need to write?

    Love and strength to you! You are so brave.

  10. Amy says:

    “…what we want…” – sorry. 🙂

  11. Amelie says:

    If you want to write about it, we will read. Because, as Bon said, we care. I hope today is the start of a successful treatment for you, one that is gentle on you but hard on the cancer.

  12. Okay. This helps. I’m on my way, and trying to stay calm. But between you and me? It’s hard.

  13. I can’t begin to imagine the scary journey of being part of a clinical trial but I’m here to read about it, come over to be a friend, and am sending tons of virtual hugs and strength your way today.

  14. Personally, I want to hear you as honest as you can be. The struggle to be brave and positive was extremely oppressive to me when my husband was sick, and we were parenting our infant/toddler.

    As a mom, I know there’s a balance of hope and courage that’s necessary, but I also know that children can handle more feelings than most of us think and often, provide us with new and helpful perspective. They can’t do this when we’re “putting on a good front,” so much, and we wouldn’t hear it anyway.

    Being honest makes it easier to be calm. There is a calm kind of fear, too.

    I’m not your husband, but when I was the wife of a patient taking Nexavar (post clinical trial but pre-market) (Nexavar reduced his tumors 75%+, BTW!), I would have preferred him showing me that I could be honest and share my fears. Instead, we both grew apart showing the wrong face to each other as well as to the world.

    Yes, I would say this even if he had lived. I have relived those last months many times and that’s when the damage was done: living with the strain of being “brave” and thus, being separate. I absolutely would say this even if he had lived.

    As a blogger, I know that what we show isn’t always the whole story, and that voice is your choice. Those who connect with you outside will respect your decision, your difference, if you choose that.

    YOU ARE LOVED. And I don’t feel your story is anywhere NEAR over.

  15. We want to hear it, if you’ll write it. Everything you write un-demonizes the great unknowns for all of us who may have to face something similar one day.

    Do great today. We’re all thinking strong throughts for you.

  16. It’s a big day and know that we’re all thinking of you and sending love and hugs your way.

    A note about writing about the clinical trial: if it’s important to you, it’s important to us. So write away if that’s what you want to do!

    And YES. Totally love that Jess.

  17. magpie says:

    Thinking good thoughts for you.

  18. Susan, tell it however you do, we’re listening, and praying. Every reaction you’re having seems logical to me, and your determination in the face of them all is what matters. For those of us with Her2+, the herceptin clinical trials changed everything! I’m holding the vision that it will be the same for what you’re doing now. You are intrepid by nature and you will get through this. Keep us in the loop please, if it is helpful to you, so we can all walk this path with you as much as we can, not actually doing it. That’s your job and it is the hardest but we can keep the vision of health strong as you go through it.
    Don’t even respond to this comment, and I’m sure many others will agree, we want you to conserve your strength and purpose for YOU! Nothing is more important than this. Nothing!

    Sending love, strength, prayers, optimism, vision…

    Elizabeth

    • whymommy says:

      Thank you. This is awesome. And see? I *want* to respond to each and every comment — and I carry that around with me, I do — Ijust don’t have the (emotional) energy to do it all the time.

  19. The honesty is in the fact that you are feeling so many different emotions. In fact, I’d venture to guess that your readers and loved ones (so many of whom are both!!) are feeling all sorts of mixed emotions on your behalf as well. I am sending lots of love and positive thoughts your way. And even as there are so many emotions, I actually think it is awesome that excitement is one of them. That you will be on the “other side of the microscope” and participating in science in a different way. I think that is very, very cool.

  20. Girl

    just keep swimming just keep swimming. You don’t have to be anything but where you are. I would have the same uneasiness/confidence about a clinical trial. My oncologist called it “you stand on the shoulders of other women and now they satnd on yours” But i get it. Just put one foot in front of the other and be okay with not knowing how you feel, just that you feel :-)Grief is so layered on it’s hard to sort out….

    Lauren
    afterfiveyears.com

  21. jodifur says:

    I want to hear whatever you want to tell us.

  22. Susan says:

    This is your space for your voice, and you know–I hope!–that however much, or what parts, of your story you want to share with us, we’re out here, reading, rooting for you, standing with you, and loving you.

  23. Lahdeedah says:

    I know it’s hard. Actually, I don’t know. Not like you know, Susan. So, if you’re up for telling us what you’re going through, how you’re feeling, what you’re thinking, how you’re coping…I would be grateful and honored.

    Much love and courage to you.

    Big prayers.

    Jill

  24. Katie says:

    Thank you for your honesty and for your willingness to exist in that uncertainty. And of course, thanks for doing a clinical trial.

    Whatever you put out there, I’ll read it.

    Katie

  25. annie says:

    Absolutely write whatever you want to and we’ll read it. Get it out and give those emotions less power over you. Being in a clinical trial gives you such a voice to all those out there waiting for that magic pill. I know.

    Chemo was never an option with my GIST (gastrointestinal stromal tumor) so each new drug option is a blessing. I’m currently on daily drug #4, which happens to be Nexavar, after almost 5 years.

    I appreciate more than ever what the clinical trial patients are doing for the rest of us as more and more drugs go from being a dream/wish/hope to a viable option. THANK YOU!!

  26. Lisa B says:

    As others have said, if you want to write it then we will read it. It’s your blog to tell your story the way you want to. I have always admired your honesty and the matter-of-fact way you tell what has been happening in your life. To me, it takes away some of the ‘mystique’ of cancer – if mystique is the right word here. You know, the ‘hush, we mustn’t talk about it’ attitude that many people adopt.

    Sending you and your family hugs and positive thoughts.

  27. Delurking to say please share your story. I think of you and your family often.🙂

  28. Susan, you write what you like, or even go silent for a while if you need to. I’ll still be here sending you good thoughts and lots of love. I’m sure all your online community agrees! I’ll especially be thinking of you today and sending virtual holding-your-hand vibes.
    I hope the trial is an outstanding success, not just for you but for all the women waiting behind you. You are heroic – which I know won’t make it any easier. Lots of love & hugs, kia kaha friend.

  29. J.J. says:

    Write for YOU. The rest of us are along for the journey. Write what’s important to you and because it is important to you, it will be important to us. Your friends will want to know what you are going through – the honest parts. Later, someone who is researching clincial trials will want to know what to expect. Writing from the heart rarely leads us astray. Don’t worry about your audience — writing what you know and believe is how you got your audience to begin with. Thinking of you!!!!

  30. I’m sure that you will go into this with the amazing dignity, grace and honesty you have shown here.

  31. Richard Foster says:

    We pray for you every day. Continue to blog your feelings and results of this new trial if you are able. We journey with you.

  32. FishyGirl says:

    I had an English professor once who said “You are the world’s greatest authority on what you had for breakfast.” You, dear Susan, are the world’s greatest authority on what you are going through right now and on what you need to write. That authority matters. Not just because of what you need now, but because one day, someone else will be going through the same thing, and your authority will mean the world to them. We love you and will read whatever you choose to give us. It’s an unbelievable gift.

  33. Steve Marquina says:

    Hi, I saw your story posted on facebook and I’m sorry to hear about your cancer. I have heard of a book that speaks of cancer and how the author has helped thousands of people cure their cancer. The book is called “Sick and Tired? Reclaim your inner terrain. Written by Dr Robert Young and Shelley Redford Young. I am in no way going to make a penny from this so please don’t think that i’m soliciting this. I just want to sincerely help people and leave this world better than when I came. Don’t believe me though read it, try it, and decide for yourself. I wish that you have a speedy recovery.

    Steve

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