sallymadsenbrain

[sallymadsenbrain]

It’s been a while since I posted here. Just got the best news, once again, of a clean MRI! All good, no change from the last time.

And I’d like to you all to support the group that has been so helpful in my cancer journey—Milton Marks Family Camp. Each year we head back to the Bay Area for an unmatchable community that really gets what it is to be living through brain cancer as a family, and a supportive experience that helps the kids grow their understanding of all of this.

Donation link here: https://give.communityin.org/e2TqL7

📷: Family photo is by Nano, camp photographer. And the other photo is a slice of my brain, a while ago and now.

xoxo

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Clean MRI today! And, I got my workout walking through the Longwood medical labyrinth. Patient-centered design??

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“In the Japanese art of kintsugi, the cracks in damaged pottery are filled with gold-dusted lacquer in order to transform the imperfections into a newly beautiful work of art... As I write this today, I reach up to touch the scar on the left side of my head. I imagine it filled with gold-dusted lacquer, holding me together and making me lovelier than I was before the surgery.”

With that stunning metaphor, my new friend Lynn Eustis began a memoir about her oligodendroglioma experience, A Singer’s Epiphany: Faith, Music, and Mortality.

Lynn, thank you for this. I too have found beauty in the experience and shifted perspective—more clearly visible in the rear view mirror, after treatments, of course.

—

I got my 6-month MRI results back today, and I am all clear!!

So thankful. This is a crazy time, and wow I miss hanging out with people in 3D, but here’s to health and family and beauty and so much more we can be thankful for.

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Each year at family camp we connect with other families living with brain cancer; this year the social distance version. Here we are building a fire, enjoying (via zoom) the hum of family art. Thank you all—it is so special, especially to be with with my group of mamas on this shared journey.

miltonmarksfamilycamp.org - so much gratitude.

[sallymadsenbrain]

May hooray

I did it, I left the safety of the home to go in for an MRI and blood test—followed by a virtual doctor’s visit.

6 month scan results... all good! No change since last summer, only scar tissue visible. Hooray!! Let the summer fun begin.

Being at the hospital was unnerving, because I really haven’t gone out much. I brought a sanitizer spray bottle and obsessively sprayed my gloved hands. With the mask on I lost a bit of sensitivity—forgot that my bike helmet and ear pods were on, for example. But there have been no COVID cases in either Dana Farber (blood draw) or Brigham (MRI), and they were quite empty. I only interacted with staff/doctors, who were of course quite professional. Safer than a grocery store, that’s for sure.

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The Boston chapter begins

We’ve done it! Packed up our lives in San Francisco and moved to Boston, with a healthy two months of family adventure time along the way. So many things have become clear in the last year and a half. It feels great to be taking action, to be doing the things we’ve said we wanted to do. Why not take a big break now, travel now. What are we waiting for?

At my last neuro-oncology appointment at UCSF, Dr C told me how happy she was that we were doing this. You’re doing so well, she said, now is the perfect time for this. It was a great vote of support, but of course it made me think about the realities of the future...

Here in Boston, I’ve had my first check in with a new team at Dana Farber. Everything is a bit fancier and higher tech than UCSF. (You can pick music to listen to during the MRI!) Great news, my MRIs are clear. Dr W was quite positive about all of my progress so far, and we really liked him and his team.

A bonus special thing happened today. When I applied to renew my drivers license last February, I got into a deep abyss of DMV bureaucracy—because my license had previously been suspended (for the Singapore seizure), I had to go through special health clearances. From there started a chain of DMV mistakes and inefficiencies. But after months of back and forth, I got my renewed license in the mail today! Finally, I’m legal and ready to show my fellow Boston drivers where it’s at. (I still have to transfer over to a Mass license... but it’s a good start.)

Love from Brookline!

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Everything happens

I’ve really been enjoying this podcast. The host—Kate Bowler—has been exploring topics like joy and loss and awkwardness, as a way to find answers in her own cancer journey.

https://www.npr.org/podcasts/583447646/everything-happens

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‪“Tough times never last, but strong people do.” Thank you for this, Ladysmith Black Mambazo.

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I’m always happy to see innovation like this!

Brain Surgery in 3-D: Coming Soon to the Operating Theater

https://www.nytimes.com/2018/01/08/health/surgery-3d-microscope-moyamoya.html

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It is charming and strange that both of my doctor appointments this morning have been in buildings that look like this...

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Dualities

Where there is beauty, there is ugliness.

When something is right, something else is wrong.

Knowledge and ignorance depend on each other.

Delusion and enlightenment condition each other.

It has been like this since the beginning.

How could it be otherwise now?

Wanting to toss out one and hold onto the other makes for a ridiculous comedy.

You must still deal with everything ever-changing, even when you say it’s wonderful.

- translated from Ryōkan Taigu, a Zen Buddhist monk who lived in Japan in the late 1700s

...........

Somebody shared this poem with me recently, and it resonates on many levels with my recent experiences—fear and acceptance; sickness and health; challenge and gratitude. Hope you enjoy it.

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A year ago...

On Nov 8 2016, I walked into the hospital for my pre-surgery MRI—‘I voted’ sticker on my shirt, my mind spinning with Election Day energy and absolute fear about the surgery. After an hour in the loud tube I got dressed again and learned that the election had flipped to Trump. The worst had already happened and I still had a surgery the next day. So I ignored the news and focused inward.

Early the next morning, I greeted doctors Berger and Theodosopolous and prepped for surgery. I tried to stay calm as the young anesthesiologist struggled to find a vein... and before I knew it I was awake on the other side, “total resection” achieved. I don’t know then that this was only the beginning of 9 months of treatments.

There will likely be more surgeries, more treatments, in my future. Since I finished my last chemo I’ve been learning more and more about the long journey and multiple chapters of brain cancer—through the family camp we went to, through a support group at UCSF, through new friends. I am humbled and impressed by the optimistic attitude that people maintain even as things turn for the worse. And the importance of a loving partner and community.

On this day I’m feeling blessed, lucky, relieved to be in such good health. My goal is to do everything in my power to keep the cancer at bay, to stay strong and be ready for anything.

Love to you all.

[sallymadsenbrain]

Chemo no more

I’m officially done with chemo! August was my last month, not a terribly hard one, and I am so thankful to have all of that behind me. 

It’s now been about 10½ months since I learned of my brain tumor. That’s been enough time for surgery (and recovery), 7 weeks of daily chemo and radiation (and recovery), 6 months of chemo while working. My MRIs are clean, I’ve blasted the hell out of my brain, and I’m ready to return to a more normal lifestyle. 

It’s been an emotional journey from complete shock and fear, to a period of restlessness and uncertainty while I had the tumor removed and waited for biopsy results, to increasing levels of clarity on what this is and where it’s going. Even though this is a lifetime disease and the cancer will almost certainly come back, my fear is mostly gone. There’s plenty of time to live and be healthy, to make the right choices, and to believe in the advances in neuro-oncology. Things are only getting better in cancer treatment.

I have found my strength and I have ideas on how to hold on to it. But over the last few months I’ve been pretty maxed out, and I haven’t stuck to all of my newfound healthy practices… I’ve often prioritized sleep over exercise, for example.

So as I pass this milestone, here are a few things I am trying to remember.

Focus on what’s important: the people I love; the adventures we have; making a difference in the world.

Recognize moments of kindness. Let the small annoyances and details roll right off my back.

Stay healthy. Eat well, exercise often, sleep, find the joy.

You are all welcome to remind me of these things any time. I’m serious. Thank you for all the love, prayers, vibes, food, shared stories. It makes a tremendous difference, still.

Love and thanks, sally

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Toasting to the end of chemo—endurance shots—with the Design for Learning crew! 

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Rejuvenated hair, recovering brain, no more headband! #lifeovercancer #haircut #kidsdidntnotice

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My radiation bald spot is growing back! And I'm not the only one around here who likes green juice...

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A colleague pointed me to this. Awesome :)