One year

Siberia, Antarctica, the holding rooms in the Diagnostic Imaging department at MD Anderson — these are among the coldest places on Earth. I bundled up in advance this time, so when one of the technicians walked by and asked if I wanted a blanket, I hesitated. “It’s free!” he shouted cheerfully. “It’s FREE!” Well, okay, if it’s free…

 A year ago, I was full of tumor and hope and headed in for a major surgery. This Monday morning, I was short a few organs and a little anxious. In the consults immediately following the surgery, I wasn’t terribly nervous because if they’ve just taken that much out of you, what even is there for anything to grow on?

But this time was different. Between scans, I had some unexplained numbness in my hands, feet and face. I noticed every single ache and pain and bump.

But thankfully, I was able to celebrate a major milestone: I am one year NED! The physician’s assistant even told me as we looked through my scan that I had a “beautiful retroperitoneum” and that she used my scan as a case study (I will accept any compliment, even if it only involves my abdominal cavity).

The in-between

Life in between scans (which are every 3 months), is pretty great. Right after a scan, I don’t worry about much at all; I stick to my routines with diet, exercise and mindfulness. I nag my teenagers and white-knuckle my way through my student driver’s rides. I go to games. I made good on my promise to go to my 30th high school reunion in Virginia. I saw my best friend from elementary school and close college friends.

30 year reunion — loved seeing you all!

Like many survivors who feel they’ve gotten a second chance at life, I feel called to do something to make things better for everyone else. Except that I’m still not sure what that is. The National LMS Foundation, an organization that is doing good things but whose logo makes me embarrassed to have the disease, asked me to create a video with advice for new patients, so I did that. I answer friends’ health related questions, with the caveat that you should not take medical advice from a marketing professional.

I try to keep up with research. My mom is now stage 4. She just got back from a great trip to Taiwan to visit family.

The work of treating cancer is evolving – and it seems to me that the most effective treatments will be a combination of metabolic therapies and targeted therapies. There are lots of things that are slow to be explored because, like any industry, cancer research involves people – who have egos and personal agendas and professional goals and legal concerns — that can get in the way. When I find out interesting tidbits – about prevention, treatment, or wellness in general, I want everyone to know. Maybe making this information digestible is something I can do. I’m open to ideas.

Other than trying to ascertain my higher calling (or working in my current calling), I’ve been gardening whenever I can. I just got my first bee sting ever today, and was kind of excited about it. I joined the San Diego Rose Society, whose meetings I love because I am the only person under the age of 70, and nobody bats an eye if someone is foaming at the mouth or calls Betty “Ethel”(they also use this poor quality mic that makes everyone sound like bees, but it doesn’t matter because most people can’t hear anyway). I paint for fun. I’ve become a nut milker, having received a low-tech but effective milking contraption for my birthday. I am brewing kombucha, fermenting vegetables, and making yogurt.

If you, too, would like to get back to basics, making your life infinitely more complicated and unraveling the benefits of specialization and the industrial revolution, then I highly recommend the Living Homegrown Podcast.

My first batch of kombucha. Botulism-free!

The bright side

1 year NED. Enough said.

 

68 thoughts on “One year”

  1. So of course I had to look up that logo. lol. … I’m super happy for you and for your family. Looking forward to all the future years of NED. Sending prayers for your mom. So glad you are healthy enough to be there for her.

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  2. Woohoo! I’m so thankful you are doing well, Sandi!
    Thank you for sharing in all the ways you do – you are a beautiful beacon, retroperitoneum and all!

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  3. I have thought of you often this past year and am so happy to receive this news! Keep on living every day- your strength, and story, give strength and optimism to others with  a similar  battle ahead of them. Wishing you all our best from the east coast-Melissa

    Sent from Yahoo Mail for iPhone

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  4. Happy 1 year NED and wishing you 50 more! So thankful you get to show other people including myself what is the true meaning of strength and unwavering resolve.

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  5. You a re an amazing writer and you make us all feel as if we are just sitting on a sofa with you as you are telling us about your journey. Your words are always so inspiring and you are teaching all of us how to live life to the fullest and to remember what is truly important. Xox

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  6. I always wonder how you’re doing, so THANK YOU for the update. I’m so happy that you’ve completed your first year in such grand style. Keep it going! I was only sorry to read that your mom’s struggle with illness continues. I’m sending my best positive energy across the miles to you, your mom, and the whole family.

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  7. We are soooooo happy you continue to be NED!!!!!!!! Maybe your calling is to rebrand the logo of the organization for them! Thank you for keeping us in the loop with your hilarious commentaries. You make me giggle!!! Love you girl!!!!
    Xoxo Ken and Gina.

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  8. Dearest Sandi, thank you so much for sharing your beautiful story on this very special day! We will celebrate your second birthday October 9th every year. My heart and prayers are filled with happy tears, gratitude and excitement for much more great things in your life and your family (Ephesians 3:20-21). Sending lots of love and prayers to your mom.

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  9. I cannot express how happy I’m for you! Today is a Jewish holiday and it’s just the best news one can get! I’m so impressed by everything you do and how you have been handling this NED status. I wish you till 120 NED all the way.
    I’ll pray for your mom today.

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  10. Sandi- congratulations!! You are AMAZING!! If you are looking to help orhers- I was amazed by the way you mobilized your resources when you first got Dx’ed to find the best MD’s (In different states, no less), get past insurance bureaucracy, get second opinions, accelerate the care plan, etc. Most without your background probably couldn’t do that! And I think it made a big difference.

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  11. 1 year NED?! it’s supercalifragilisticexpialidocious! This news made my day, my week, my month. I am thrilled and hope that you are finding more zen inside yourself for teen driving lessons than I have mustered so far. Lots of love and hugs to you, Sandi.

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  12. Sandi I’m so Happy to heat the good news I forwarded it to the Sisters and they asked about your mom they would like to know her first name to pray for her. It was so good to see you at the kids 8th grade graduation. I’m so glad your being s Drivers Ed teacher haha. Love jane

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  13. So thankful for NED. So thankful for you. You have shown so many how to tread through some of life’s most confounding and frightening circumstances with resolve, grace, determination and of course thorough research. You are dearly loved Sandi.

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  14. Love this so much – 1 year NED!!! Can’t wait to see how your exploration of that “second chance” unfolds…will be taking notes and following your lead, as always:) In the meantime, sending love and light to you and your mom.

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    1. Thank you!!! Don’t follow my lead — I think I’m best used as a cautionary tale :). Look forward to getting together sometime soon and catching up!

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