Thursday, September 26, 2013

Daring greatly.

Has anyone read the Brene Brown book Daring Greatly?  Its on my list and I continue to hear good things about it.  





The best way to start any infusion day... 




I have a selfie of almost every infusion I have had- some day I'll have to track them all down and collage them or something. 


I go to my appointment alone again on Tuesday.

Dr. Panwalkar was late.  He walked in and apologized saying "I was reading."  

"Oh," I say, waiting for him to continue.

But he first wants to pull up my brain scans and go over them.  

He tries to get side by side images of my most recent brain mri, with the one from 3 months ago just prior to treatment.  Its slow going loading them on the computer and he has to make a lot of adjustments on each one to get them close to the same "slice" so we're comparing similar views.

Eventually we ascertain, that indeed, 2 of the most recent spots have shrunk, while the oldest spot in the side of my head looks stable.  The bigger question is, is it stable cancer?  Or is it necrosis- meaning dead/dying cancer or tissue.  That can only be ascertained with a biopsy which is no small feat, and when he says "So we'll watch and see," I am fine with that conclusion.  

Next he tells me he has been reading about another oral pill I could possibly take, that helps make my cancer cells more likely to respond to hormonal treatments like Tamoxifen.  Dr. Foster in radiation has suggested I go off of Tykerb while I am doing radiation.  So Dr. Panwalkar is researching other possible treatments.  

The pill he suggests causes me to pause.  When I ask about the serious side effects, he says there are a very few people who have had serious side effects, but overall its well tolerated with mild side effects.

What I don't tell him, is that I personally know one of those women who did have the very serious side effect and spent months in the hospital trying to recover.

I am not her, and there is very little likelihood I would experience the drug like her.  But I am still numbed with the thoughts of how precarious the next few weeks and months may be for me.

Hello vulnerability.

Yet. I know I am at a crossroads.  If I am going to have an "aggressive" radiation treatment, than we need to find a tolerable chemo for me to do, and there aren't many options for those that I haven't already done.  

Dr. Panwalkar then asks me to refresh him on how many radiation treatments I will have?  15 for the lymph node, and 5 for the lungs, I reply.

5? He says, somewhat incredulously.  And then his hearty laugh escapes and he says wow, he is really going to obliterate those tumors!

Hello daring greatly.

We proceed with a quick physical exam and everything appears fine.

 Once again- I came into the appointment with my list of questions about Tykerb side effects and what to do. But it all took a back seat in the bigger picture.  Quite possibly, I will only be doing one more dose of Tykerb anyway, and somehow that makes it a little more bearable all the way around. In the meantime, he goes along with my suggestion of adjusting my Tykerb dose down for a day or two when I do describe the nature of my side effects. 

We conclude our visit and I ask him about the women's health conference he and I have been asked to present at. 

Gulp- hello showing up and being seen.  Hello Embrace. (And going way outside my comfort zone.) Gulp-gulp.

 He tells me a brief description of what he is presenting on.

I tell him I just wanted an idea, because I will be going before him, and introducing him.

We are out in the hallway now and he laughs and says, Yes, that is what Shelby told me.  Just please, go easy on me! 

Its my eyes that go big now!  What?  I say incredulously.  (How could I have anything but good to say about this doctor?) 

But I think he is teasing me.  He reaches his arm around my shoulder and squeezes me, uttering a quick goodbye, before he hurries off around the corner. 









30 comments:

  1. Hi Vicky...I have become a fan of Dr. Brown thanks to Oprah. Have you read her "Parents Manifesto?" It is great. Here's my link to it http://preppyemptynester.blogspot.com/2013/04/thanks-for-introducing-me-oprah.html. Your doctor sounds like a wonderful, brilliant, humble man. You are in my prayers.

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    1. Hi Katie- I have read the Parents Manifesto- so good. Yep- I lucked out in the Dr. department for sure :) Thanks for the continued prayers!

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  2. When I dare to fret about someone else's situation, Becky is quick to tell me, "that is not *your* story." Still I totally understand why the new chemo pill would make you anxious. Good news on the shrinkage!

    I have heard wonderful things about that book, but haven't read it. I really should!

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    1. My stack of "to read" just grows all the time. Harder for me to focus for extended periods of time it seems... always something new to contend with so it seems!

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  3. Praising God. Thankful for shrinkage and stable and obliterating.
    Thank you Jesus.
    Love.

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  4. Yes, good words, those. Shrinkage. Stable. Obliterating.

    And that man was sent, I'm telling ya. :-)

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    1. I know- I feel so fortunate- truly :)

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  5. Hi sweet friend!!

    I am about 25% of the way through Daring Greatly - so good! When I do "show up and been seen and say how and what I feel and need" its challenging to not regret it later! Being volunerable is hard - but I do know when someone is that way with me - I feel honored and blessed in that - we are ALL facing something and we need to knwo we are alone!

    I am glad to read those words, shrinkage, stable and that your other spots will be obliterated -- I am contending for more too - thankful you are where you are but asking big and for more! My prayers continue dear friend!!

    Love you!
    xo

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    1. ...we need to know we are NOT alone"

      sorry for the typo!!

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    2. ha- my mind glossed right over the typo and I did not see the "not!" Glad to hear someone is reading and liking the book! Love you sweet one!

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  6. you are beautiful - by the way!

    xoxo

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    1. Totally blushing now- but- thank you :)

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  7. i've read daring greatly, and if you want a cliff notes version, i suggest looking up brene brown's visit on oprah's super soul sunday show. there were 2 parts to her visit, and i think the first one is better than the second.

    thanks for the update about your visit with the infamous Dr. P. i'm wondering why you didn't express your knowledge of someone who had a serious side effect to the proposed drug, but i know you have the kind of relationship with him that will facilitate another conversation if indeed you go forward with that drug.

    the options may seem to be narrowing, but God is the One with ALL the resources, so keep embracing what He presents. oh goodness, friend, your faith is inspiring and genuine and earnest and beautiful.

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  8. I think your selfie is lovely. I love your doc more and more, as you write about him. All will be well. I am privileged to be shadowing your journey, dear Vicky. Sending love and prayers.

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  9. May I gently ask why you are going to infusion alone...
    I do wish that I could do more, my friend.
    You have a family that loves you, friends that love you, and a wonderful doctor.
    With all this going for you, it looks like we could all put a "whupping" on that cancer.
    Praying with all my heart...
    Jackie

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  10. I've not read the book. Your doctor sounds like a real sweetheart.

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  11. wow so much excitement. I guess you have to keep doing your homework.
    But the results are sounding good so far so keep on going and be like Churchill.
    Never surrender. These doctors look like they are really working for you.

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  12. You certainly have had the courage to be vulnerable. Sharing your deepest feelings and having those "hard conversations" are such a big part of what has endeared you to all of us! We are sharing, learning, and growing because of you and your touching words, dear sista!

    Glad you'll get a break from the Tykerb while the radiation works its magic. Yet, I know the uneasiness you must feel about yet again another chemo to try. But as you say, "dare greatly"! Always remember to ask for what you need, in prayer, and from those who surround you with love and concern.

    I hope I am able to attend the conference! What a joy it would be to see you and Dr. P.!

    P.S. Love your selfie - what a beautiful pic! And I adore your son. What a gift it is to have him in my classroom this year!

    Love you, my friend!

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  13. Oh finally a good, real read! Love your pic...just love! I read both this post and your last post. I am at a ranch house that has very poor cell service. My lil lap top doesnt like to run on one bar. When I read your post..I love how real you are...how real and the beautiful way you put that reality. Continued prayers, positive thoughts and mega blessings are wished for you every day. Thanks for being you, for sharring like you do...you are teaching us all....GRACE under fire... Hugs and love beautiful you :)

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  14. It sounds as if you have complete trust and faith in your doctor and that is such a good thing. I'm trying to feel that way with Michael's (many) doctors, but I have to admit it's hard. Sometimes, heck... most of the time, I feel like he's some sort of science experiment.

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  15. Dearest Vicky,
    To me YOU are someone who is, in so many ways, "Daring Greatly". You do have the courage to be vulnerable and you do show up and be seen. We are so blessed by your vulnerability and showing up in each post you write.

    What Dr. Brown suggests is that for so many folks there is an overwhelming fear that
    when they are exposed and real, that they will be somehow told that they are not enough.
    That when they are vulnerable, they will be shamed. To share how we are feeling, ask for what we need and have the hard conversations...well, it takes great courage.

    You are doing these things daily, dear Vicky. And as you do, we all gain courage to be more real, to say who we really are. You are showing us and teaching us, by your example, that we too can do this. It's inside all of us to Dare Greatly. Sometimes a cancer journey, or some other unthinkable challenge, brings us to our knees, but it also helps us to be more authentic. And as we lean on God, we find strength and courage we never knew we had.

    As Peggy Sue said so perfectly, you, my dear friend, are "Grace under fire!" And I love, love, love how Dr. P ministers to you with his simple hug, familiar rap, and quiet encouragement. I could imagine the two of you pondering those brain scans and almost hear him say, "Wow, he really is going to obliterate those tumors."

    I so wanted to join the conversation and tell Dr. P."Yup, Dr. P, that's what we are all praying for. Obliterating Vicky's tumors is on my prayer list. And we won't stop praying!"

    And that picture of you, dear friend? It is a treasure.
    Sending you love, prayers and hugs!
    Linda

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  17. You have this uncanny ability to take us with you wherever you go. I'm sitting here trying to figure out how you do it. I think it IS your vulnerability. That you've taken down your walls. That you care more about sharing your life than feeling safe.

    Maybe that's it. You care.

    And because you care, you're teaching us to dare greatly.

    To live fearlessly.

    You have the most tender, precious heart, Vicky.

    P.S. Details of the conference? I want to put it on my calendar so I can pray.

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  18. You continue to show us all how to dare greatly. I find it no small wonder that I wait to dare greatly when I am pressed. Oh, that I would step in with both feet. Thrilled to read the words shrunken and stable. Praying Dr. P's words for the rest as well and that all of the treatments are successful indeed! Love the selfie! Love and hugs across the way!

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  19. Courageous and vulnerable is describing you to a tee, sweet Vicky. I am sending you love and strength and so much more energy for you to face all of those new challenges. You are so beautiful inside and out and I am glad you are taking selfies xo

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  20. the two of you, dr. p and you, are amazing dose of hope...and love...and endurance...and trust...and faith...xo

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  21. I'm so glad you have a good relationship with Dr. P. Tamoxifen? It saved my mom's life! She's been cancer free for 27 years. Blessings to you Vicky.

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  22. Hi Vicky, seems you have a wonderful relationship with your doctor. you really are an inspiration, sending you love and hugs.

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  23. I'm so grateful for your doctor and that you can fully lean into him and trust his care of you, and for you. I read your last post first so I had no idea that you were not only speaking but introducing Dr. P. I hope this is filmed and can be posted. I would love to see/hear both of you. Praying for the right balance of everything and that the side-effects which so afflicted the person you know will be absolutely absent from your body's radar. May it be so and may you do more than escape side-effects....may you thrive.

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I welcome what you have to say. Thanks for taking the time to grace me with your thoughts and words!

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