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Putting my story to the side

December 31st, 2013

Hello,

It’s been over 6 months since I posted on my blog. I have entered the stage of recovery where I am re-assembling my life, rebuilding my identity.

Although I have always been eager and willing to share my medical journey and what it has meant to me as a human being, this is intimate terrain, not something I care to share with the world of google.

Of course I still have medical stuff to deal with, but it’s small potatoes in the cancer world: scars, physical therapy, chronic lymphedema, scanxiety.

Meanwhile, friends and fellow cancer travelers contend with much greater challenges: ghastly long term side effects, unthinkable choices bequeathed by genetic testing results — even recurrences.

I am happy to keep my blog up as a resource for those who seek it here. My topic through this ordeal was fundamentally about the social and emotional realities of cancer and its treatment. Unfortunately, although the science has been advancing in important ways, the story of being a young mother with advanced cancer may not be changing so much any time soon. Same with my other story, being the sister of somebody who died too young from this awful disease.

I am grateful to have garnered so much love and support through this blog and other social media. It gave me a boost in my general faith in humanity that will stay with me the rest of my life.

No doubt cancer has changed me. Throughout my life, I have responded to adversity by becoming an educator and an advocate. It’s the only way I know to make my suffering worthwhile: by using the hard-won wisdom to lessen the suffering of others.

I will do this work primarily through the Breast Cancer Consortium, but I also will maintain my connection to organizations like Stupid Cancer, Little Pink Houses of Hope, Gilda’s Club, and Critical Mass that support young adult patients. There is still so much to be done. I am just putting my story to the side.

If you are coming to this blog looking for solace, please use the search tool for some key words: parenting, body image, friendships, identity loss, grief, daily life, gratitude. I have also included a timeline of my treatment at the end of this post if you are wanting to know what different things were like for me.

Wishing all of you peace, health and love.

– Lani

If you want to hear my experiences of different phases of treatment my timeline was roughly as follows:

October 2009:
diagnosis

November 2009 – February 2010
chemo

March 2010 – April 2010
mastectomies and recovery

May 2010 – July 2010
radiation

July 2010 – presentre-entry

November 2009 – November 2010
Herceptin

October 2011 – May 2012
reconstruction

This entry was posted on Tuesday, December 31st, 2013 at 6:03 am and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

35 Responses to “Putting my story to the side”

  1. December 31, 2013 at 11:51 am

    Wishing you Life to the Fullest.

    Lovelovelove,
    Deborah

  2. December 31, 2013 at 4:27 pm

    Thank you, Lani, for putting so much love & candor & wisdom here. So many of us have benefitted & will continue to benefit from your words. I can very much relate to this. We are in similar places on our roller coaster rides. I don’t quite know what to do with my own blog yet, but I’ll figure it out. Just trying to paste my own identity back together myself. Good luck & health to you, and wish you & your family a fabulous new year. xoxo, Kathi

    • January 1, 2014 at 7:42 am

      You are an artist, so I know your newly bricolaged self will have flair and style — and, of course, fierce intelligence and humor. I am grateful Rach brought us together, KK. You are one of the voices I depend on and love to hear. Wishing you the best too, and I know we will stay in touch, blog or no. xoxo

  3. December 31, 2013 at 4:37 pm

    Love you, Lani. Your warm, compassionate and always wise voice and your ardent advocacy on behalf of young mothers and families dealing with cancer brought much needed attention to a lonely, frightening area. No one will ever forget what you’ve done and the style with which you did this.

    You are a true original and I am so fortuante to have crossed your path.

    Love,
    Jody

    • January 1, 2014 at 7:40 am

      Oh Jody. You have a way of cutting right to my heart and bringing tears to my eyes. Few people have made me feel as understood and heard as you in all this mess as you have, my friend. I am truly grateful. And of course I love you dearly.

      Lani

  4. December 31, 2013 at 5:12 pm

    In tribal days, people would gather around the fire and share stories of overcoming challenges, loss, struggles and finding their way through adversity. Through the sharing of these stories, members of the tribe learned from the experiences of others and received support. I believe today’s memoirs and personal blogs are our modern day solution to the campfire of long ago and that when we share our stories, we not only give ourselves an opportunity to heal and give back but we also inspire others and offer up new possibilities.

    Thank you for your contributions that have helped so many and will continue to do so. It is advocates such as yourself who continue to shape survivorship. There is much more to be done to help survivors improve quality of life and address not only the medical impact but also the journey you are now on of finding your new ‘who’. Wishing you all the best as you step forward into what’s next for you!

    • January 1, 2014 at 7:39 am

      Thank you for that beautiful image, Tambre. Blogging has felt close and personal and communal at its best, and I am grateful that so many of my closest companions around the fire have joined in wishing me well.

  5. December 31, 2013 at 6:45 pm

    Love to read this and hear your voice again Lani.

    -k

    • January 1, 2014 at 7:38 am

      Thanks, friend. I know you understand me on this.

  6. December 31, 2013 at 7:39 pm

    Dear Lani,

    Chemobabe taught me so much and your story resonated with so many to whom I was a conduit on SharingStrength, Twitter, and more. I love your decision to put this part of your story to the side and dedicate yourself to this chapter.

    Like Jody said, I feel fortunate that our paths crossed.
    Love,
    Colleen

    • January 1, 2014 at 7:38 am

      Thank you, Colleen. You are another important friend, especially as in those early days when I was trying to get my head around things, both health and social media-wise. I appreciate your generous listening and continuous learning. And I think of you whenever I make my coconut lentils! :)

      Lots of love to you.

  7. December 31, 2013 at 8:04 pm

    Lani-

    Sending much love to you. Your wisdom and unflinching ability to tell it like it is has made this space invaluable. The information is timeless.

    I will never forget the kindness you extended when I first ventured out into the twitterverse. You embraced me and welcomed me with open arms. My world is a better place because you are in it.

    Much love,
    AnneMarie
    xoxox

    • January 1, 2014 at 7:36 am

      AnneMarie,

      You are always so generous with your gratitude, but it always makes me feel humble. You have such a strong and passionate voice, you are such a tireless advocate, I know you would have found some way into the #bcsm community. I was just lucky to have had the honor of extending my hand first.

      Lots of love to you too. xoxo

  8. Billy Sea
    December 31, 2013 at 8:12 pm

    All my very best wishes to you on the next chapter of your life.

  9. Nancy
    December 31, 2013 at 8:20 pm

    With all my heart, thank you Lani. Without even knowing, you stepped into my life when I needed you most. Your sharing, your insight….your voice… helped me to slowly move forward and try to find my way. You will always be important to me.

    UVMer

    • January 1, 2014 at 7:35 am

      As will you to me, Nancy. Your ability to listen and connect meant a lot to me, in those early days and throughout this ordeal. I am so glad to hear that you are moving forward. I am so glad we were able to share a little amidst so much loss. xoxo

  10. December 31, 2013 at 10:30 pm

    Lani – thank you for being such a tireless advocate. Whether you put your energy into this blog or into supporting the wonderful organizations that you named, you have and will continue to make a huge difference in the lives of many.

    • January 1, 2014 at 7:34 am

      Thank you, Deanna. Those words mean a lot coming from you.

  11. January 1, 2014 at 9:07 am

    Every superhero needs to hang up their leather bondage wear at some point.

    Happy New Year! Xoxo

    • January 1, 2014 at 11:31 am

      It’s SO funny you should say that, Kenny, because last time I was in Gotham I was having the SAME conversation with Bat Man in the Bat Cave.

      Oh wait… were you there too??

      Happy 2014. You haven’t gotten rid of me yet, Ginger.

  12. January 1, 2014 at 9:44 am

    Thank you for your candour and your story. I started following your blog early on after my diagnosis, and it was a good way to connect and learn more (since I knew nothing except my own experiences). I’m wishing you the best with your life away from cancer. And hope to see you online too. Happy New Year :)

    • January 1, 2014 at 11:30 am

      Thank you Catherine. I will definitely keep in touch and look forward to keeping up with you.

  13. Dganit Eldar
    January 1, 2014 at 11:09 am

    Lani, Your bravery, self awareness and confidence are admirable. I met you as a parent of my student. It was the first time I needed to support a student in such a complex way; New to town and school culture and worried about her mom, your daughter – my student, fast became like my own daughter. That made it easier for me to know what to do, along with your insightful blogs. Your thoughts, words and behavior gave/give insights, support and a path to follow to so many different individuals holding so many different roles. I am happy to have you as a friend now. Lechayeem to you.

    • January 1, 2014 at 11:30 am

      This touches me so much, Dganit. Thank you. I am grateful for your friendship.

  14. January 1, 2014 at 2:59 pm

    Hi Lani,
    Well, you know me… it always makes me sad when one of my favorite bloggers decides to set her blogging aside… I know that’s entirely selfish of me! I will miss the wisdom, kindness, and compassion you have shared so candidly via your blog, but I am truly happy that you’ve reached this juncture. I know you and your incredible voice will not really be quiet. Like so many others have said, I’m grateful our paths crossed. Best wishes to you in the New Year, Lani. Much love…Nancy

  15. January 2, 2014 at 12:41 pm

    Lani,

    I am so glad I got to know you, through your blog and briefly in person. I look up to you and have been considering some of the same issues you address here in this post. Even in your “last post” you are helping me figure out my path in this cancer journey.

    Your friend,
    Liz

    • January 2, 2014 at 8:12 pm

      Glad to meet you too, Liz X, here and IRL. You have done a ton for the brain cancer community, and whatever your next steps, I know your voice will always count. I am honored to have been a support to you at any point along the way.

  16. January 3, 2014 at 3:12 pm

    Well, dear Chemobabe, your insightful, thoughtful, passionate, and honest posts have certainly inspired me. I feel fortunate that I will still get a chance to work with you as the Breast Cancer Consortium moves into 2014. Knowing what to hold and what to let go of requires such introspection, something we all need to practice. I’m glad you are doing what is best for you.

    Much love,
    Gayle

    • January 6, 2014 at 9:13 pm

      I am not through with you, Sulik. I hope to continue working with you and being your friend for many, many years ahead. Thanks for your friendship.

  17. Beckye Estill
    January 4, 2014 at 1:29 am

    Lani,you have made such a huge difference in breast cancerland because of your generosity, honesty, and vulnerability. Thank you for being such an encouragement to so many. I know you will continue to impact many lives with the same grace and courage in your future endeavors. Godspeed. Grateful for you, and so happy for you.

    • January 6, 2014 at 9:13 pm

      Thank you, Beckye, for honoring me with your presence over these years. I am truly grateful.

  18. Ruthann
    January 20, 2014 at 12:08 am

    Lani, I wrote to you years ago. We were diagnosed about the same time and like you, we had just moved to a new city. I read every entry in your blog and thought to myself “here is someone who understands what I have gone through.” I cried. I do hope you will keep the blog up; I refer to it for inspiration. Thank you for all of your encouraging words and letting us know that our anxieties and challenges are normal. You have helped me thru one of the most difficult times in my life. Thank you for your honesty and willingness to share your story. All the best to you and your family.

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