Hello – long time, no blog/chat. Got a little distracted with … attempting to merge with my couch?

I’ve been pondering a longer “deep thoughts” blog, but my pandemic brain is not cooperating with actual writing. In the meantime, I wanted to share an update about The ROS1ders and a new fundraiser event I’m hosting.

Last year, the ROS1ders formally incorporated and became our own 501c3 non-profit organization. Back in 2015, when my co-founders and I launched our effort to help ROS1+ cancer patients, we were new to patient advocacy work and we relied heavily on the GO2 Foundation for Lung Cancer (formerly ALCF) for structural support. We love GO2 and are beyond grateful for all their help, but after several years, it was time for us to become independent. As part of this transition, we can now raise money for The ROS1ders, Inc. directly.

We’re working with the top ROS1+ researchers in the world to develop our next research project to improve outcomes for ROS1der patients. It’s exciting to have started planning the sequel to our groundbreaking ROS1der Cancer Model Project, but we know it’s going to take resources, so it’s time to focus on fundraising again.

Cue my newest ROS1der FUNdraiser: Intro to the Zentangle Method! While I’ve been busy holding my couch down, I recently found the time to take a 4-day intensive seminar and become an official “CZT” (Certified Zentangle Instructor). A friend gifted me a class with a CZT in 2014 when I was doing chemotherapy. The Zentangle Method has been shown to reduce pain and anxiety, and it also scratched my itch for creative expression, so it made a perfect gift for me. I tangled a lot during my first year of diagnosis, and ramped up again during this pandemic/election clusterf*ck of a year. So I finally decided to take the leap and become a CZT myself.

I can’t wait to share the Zentangle Method with others, but I’m a little shy about jumping into teaching. So, I thought a fun way to get started would be to offer a donation-based class, where participants can contribute to my ROS1der charity fundraiser* (suggested donation ~$25). This will be a pandemic-friendly class via Zoom on December 5th at 10am PST. If you would like to learn more about this fundraiser class please check out the event page here (if you’re not connected to me on Facebook and can’t see this event, please message me at goldmanlisa[at]gmail.com and I will hook you up). It’s going to be fun! 

Bonus for those that have read this far, Update #22: I had scans in August and they were stable, yay! It’s almost time for another round already, boo. But, I’m feeling good (knock wood), so let’s focus on the yay!

*Note: This fundraiser page is not exclusive to this Intro to Zentangle event.  I welcome and am exceedingly grateful for any GivingTuesday/HolidayGiving/WheneverYouLike donations and will keep the page up for the foreseeable future. Thank you for your support! 

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An example of the art each participant may be creating!

I’m so thrilled to announce this fundraiser for the Addario Lung Cancer Foundation’s ROS1 Research Project. Accomplished artist and art instructor Tehila Eisenstat will be teaching an art class! Attendees will paint a picture, using acrylic paints, on a stretched canvas. Absolutely no experience is necessary; in fact, Tehila loves working with all levels, even very beginners. You will be amazed at what you can produce with her guidance in just a few hours.

Tehila is a dedicated supporter of cancer research and cancer care in her community. Before retiring to Carmel, CA this summer, she taught classes regularly for cancer patients at both El Camino Hospital in Mountain View and Palo Alto Medical Foundation in Sunnyvale. It was in this capacity that she taught me for over a year.  Her classes emphasized using colors and subjects that uplift spirits and reduce stress (and who can’t use a little of that?!).

We will spend 3 hours together painting, chatting, having fun, and supporting a very worthwhile cause. Please come join us!

Here are the details:

Time — Wednesday, August 31, 2016, 4pm-7pm

Place — El Camino Hospital, 2500 Grant Rd, Mountain View, CA 94040

RSVP — Please RSVP by August 25 to lisa@lungcancerfoundation.org. Seating is limited!

Cost — Requested donation minimum of $50. 100% of proceeds will go to the ALCF ROS1 Research Fund. You may bring cash or a check made out to ALCF or Bonnie J. Addario Lung Cancer Foundation (note in the “memo” section that this donation is specifically for the “ROS1 Fund”). Or, if you’d prefer to do it by credit card, please donate here, and bring a print out of the screen or email evidencing your donation. (Receipts can be provided for tax purposes.)  *BONUS* – an anonymous donor will match 100% of every donation made for this event, dollar for dollar, and they invite you to “stick it to them” and really donate a lot, challenging us to meet their maximum of $2,500 (so we’d raise a total of $5,000!). Note: if you cannot attend this event, you can still send in a donation if you wish. 

All necessary supplies will be provided, but if you have favorite brushes or paints or other tools, please feel free to bring them along.

Tehila’s classes generally aren’t too messy, but paint does occasionally get where it should not. Please bring an apron if you wish to protect your clothing.

Light refreshments will be provided.

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Please feel free to print out this flyer and distribute. We need help reaching as many ROS1+ patients as possible, especially outside of the lung cancer community. Thank you!

I have wonderful news! With the help of the phenomenal Addario Lung Cancer Foundation, we have just launched the ROS1+ Research Project. The first step of this research project is an online survey.

If you have ROS1+ cancer (note: ROS1 has been found in many types of cancer, and this study is open to anyone ROS1+, not just lung cancer patients), please join us and take the survey — the more ROS1ers that participate, the better the study will be, increasing our chances that researchers will turn up possible treatments to help all of us.

Why is this ROS1+ Research Project important to me? I am doing well on my medication Xalkori, but it is not a cure. If I become resistant to Xalkori, things could unravel pretty swiftly. I know it’s hard to believe, looking at me, as I teach spin classes and carpool my kids and chat with you over coffee, but cancer can go from undetectable to ICU-level-crisis faster than you’d ever imagine (I speak from experience).

What I’m saying is, even if I’m feeling physically OK today, the view from here is scary. ROS1ers need more treatment options. And we need them now.

The survey marks the first time anyone has dedicated research specific to ROS1. Once this survey is well underway, the next step in this ROS1 research initiative will be to analyze blood and tissue samples. This is an ambitious and expensive undertaking, and we need financial help!

Fortunately, I’m trying to make it easy and fun for you to help. If you are interested in further supporting the efforts of the ROS1+ Research Project, I am planning a few FUNdraisers:

1. Diptyque (& Toss Designs): On June 25 & 26, the Diptyque store in Palo Alto will host a special event. 10% of any purchases during this time will go to the ALCF ROS1 Fund–and as a huge bonus, they will give customers a free luxury mini candle ($32 value, no minimum purchase req’d, and their candles are amazing, btw). I will be there on Saturday from 1:30-3pm to greet people and spread the word about this charitable effort. Come say hi! If you cannot visit on June 25-26, they will honor the 10% donation plus free mini-candle to anyone who mentions this fundraiser anytime between June 20-26. You can even call in your order at (650) 665-7128 and they will ship it to you for free! Thank you Diptyque!
   Additionally, on Saturday June 25 only, in that same Town & Country shopping center, Toss Designs, a cute little gift boutique will be donating 15% of all purchases to the ALCF ROS1 Fund. They have some great stuff for summer. Thank you Toss Designs!
   Happy Shopping!
2. Art Class: In late August, my dear friend, artist Tehila Eisenstat, will offer a group art class where 100% of the class fees will go towards the ALCF ROS1 Fund. She does beautiful work (check out her online gallery) and is a wonderful teacher. She has taught patients and staff at local hospitals, including me, for years. We are still working out the details on date/time/place, but stay tuned, this will be a really fun event!
3. Indoor Cycle Class: I hope to offer another cycle class fundraiser sometime this Fall, similar to the one I did in 2014. A couple of phenomenal, world renown, master instructors have offered to teach. I just need to find a club willing to host. Please let me know if your club is interested in hosting (you can reach me at lisa [at] lungcancerfoundation.org).

Additionally, you can simply donate directly to the ALCF ROS1 Fund. Any and all support is appreciated beyond measure. Thank you so much for considering this worthy cause.

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(1) A Letter to My Mom — This is the coolest thing! Last year, I got to deliver to my mom her Mother’s Day letter via this blog, this year, I get to deliver her letter in a real live book! (Happy Mother’s Day a little early, Mom!)

Shut the front door! That’s me and my mom in a real book!

(2) Constipated Parrot Joins Team Lisa — My friend Heather headed up an awesome Team Lisa for the Milwakee Fight for Air Climb in March. Heather is a Milwaukee native and was my roomie from my junior year abroad program back in 1993. I also lived in Milwaukee from 2002-2006 and several of my Milwaukee friends and neighbors joined in (thanks Sarah, Susan & boys and Peggy, and a grateful shout-out to all Heather’s friends and coworkers, too!).

Jerry, Heather, and the Constipated Parrot!

Sarah, Susan & Heather

Jerry – I’m not sure who you are, but this picture makes me think we could be great friends.

After the climb, Heather sent me all the event swag, including the parrot. We win for best mascot ever, am I right? #winning

(3) Clinical Innovation Prize — Did you know that only 3% of adult cancer patient participate in clinical trials? Over 85% of cancer patients are unaware that clinical trials are a treatment option. We need to change these stats – it’s the only way to get new drugs through the pipeline faster. Lives depend on it. Ideas to increase participation in clinical trials are needed! The BALCF has teamed up with Free to Breathe to solicit your suggestions, and they’re even offering a $75,000 prize. They welcome submissions from any and all (you do not need to be a doctor or scientist -it might even be better to get some fresh ideas from outside the typical system). The deadline is coming up on May 6th, and there aren’t a ton of submissions yet, so you have a good chance. Put some thought into it and submit something? Pretty please? Check out the details here.

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Photo by Wesley Lelieveld

After returning home from my oncologist, I received a package full of treats for the Jewish holiday of Purim from my friend Heather. It’s always fun to get a surprise like that and I wrote to thank her right away, telling her she made my day, especially since I’ve been feeling a little down. Heather responded that if I needed a pick-me-up story, she had one to share, and then she proceeded to share the following tale from her nursing shift at the VA hospital:

“I had a parrot. At the va last night that came in for constipation. As soon as u brought him back to the room I could see there was more going on. I figured ether psych or detoxing. Anyway, he started getting very panicky and said I should call a priest or a rabbi because he needs an exorcism.”

Huh? I’m not sure whether it says more about our VA hospitals or my mental state that I paused here for a second, but only because I didn’t think a parrot would know how to get itself admitted to a hospital. In my head, I just corrected her, “She must mean someone brought a parrot to the hospital.” So, I’m visualizing a veteran with a crazed parrot who can’t shit, seeking some sort of medical exorcism for his pet. Have you been in a VA? I haven’t, but I saw one on TV once. It seemed like the kind of thing that could happen. And, Heather’s “psych or detoxing” response seemed reasonable. Continue:

“Then the guy grabbed my hand and pulled it to his chest and begged me to forgive him for his sins against the Jewish people. He kept saying ‘I have done some very bad things’. I’m thinking, maybe he was a neo nazi in his youth. Maybe he painted some swastikas in some garages. So I told him I forgives him but that we should focus on his medical issues right now. But he kept saying ‘no I am talking like 1933 to 1946 bad things.’ Which this man was not alive for. So then he starts screaming in German. Really screaming. And begging me for redemption.”

Now I’m confused. I think, “Wait a sec, is this story about a dude with a constipated parrot or an anti-semite?” It’s easy to get those confused, obviously. So, I go back to the beginning and I figure out there’s probably no parrot, that’s probably an autocorrect for “patient.” Can’t get anything past me. Back on track, I resume the story:

“Then he told me butler was alive and he comes into his room.”

Wait. Butler? How did Carson get mixed up in this? Although, come to think of it, he does seem like he might know a thing or two about constipation. Carry on:

“He believes hitler is inside him and he needs forgiveness.”

Ah, ok, butler must = Hitler.

“So I was like, ok ok , no problem. I forgive u … The night ended with we taking him up to the psych unit while we both sang James Taylor songs … Hope that story brings a smile to your face.”

Yes. Yes, indeed. This story did bring a smile to my face, but perhaps not for the reasons intended. Oh, autocorrect, I do love you so. And, as unexpected bonus, I believe I have a case to get another brain MRI any time I want. I’ll just get in line behind the parrot.

If you want to meet Heather, have fun, and help raise a little awareness and money for lung cancer, you can join her at the Fight For Air Climb on March 21 in Milwaukee, WI (find the “Lisa’s Milwaukee Homies” team page here). I’m pretty sure she’ll leave any constipated, racist parrots at home.

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It’s been a busy stretch for Team Lisa. Let’s catch up on the recent activity.

San Francisco Walk

A month ago, we participated in the Bonnie Addario Lung Cancer Foundations 6th Annual Your Next Step is the Cure San Francisco, CA 5K. 20 supporters and one dog enthusiastically walked 5 kilometers to cheer on Lisa. Alexa Morris made the T-shirts with a Team Lisa design that we’re all wearing. Thanks to your support, Team Lisa raised over $5,000 for the Addario Foundation. My photo album.

Stanford Football

Chris Draft, a pro football player and Stanford alum, lost his wife to lung cancer. He created Team Draft to help raise awareness about lung cancer; specifically to “change the face of lung cancer” by showing lung cancer victims/survivors in a new light. Part of his outreach efforts is to take small groups of lung cancer patients to sporting events.

Paul Kalanithi, Molly Golbon, Andrea Gudmundsson, Lisa and I joined Chris Draft for the Stanford-Washington State football game. Thank you to Chris Draft and his crew for their generosity. My photo album.

Breathe Ride

As another fund-raiser for the Addario Foundation, Lisa organized a special indoor cycling class led by two master instructors, Bunky Webb and Buddy Macuha. We had a great turnout at the ride, and many of the people made substantial (and in some cases extraordinary) efforts to be there, which meant a lot to us. In total, we raised about $3,000. It was fantastic to see Lisa back on an indoor cycling bike! Many thanks to Bunky, Buddy and the Bay Club Santa Clara for their generous support. My photo album.

At the ride, Lisa gave a short introduction about her story and her goal for the ride. Please take 2 minutes to watch this inspiring video:

The post Catching Up With Team Lisa: SF Walk, Stanford Football and Breathe Ride appeared first on Every Breath I Take.

You guys — this is going to be SO MUCH FUN. I’d be encouraging everyone to go, even if it wasn’t for a cause near and dear to my heart (literally), but add in the philanthropy aspect and it’s a no-brainer. Sign up today – Let’s sell this sucker out and raise some awareness and money for lung cancer!

P.S. If you are interested, I really encourage you to sign up early. Spots are limited. If there is demand, Bay Club may be able to bring in some extra bikes, but only with enough advance notice to arrange it, so last minute ads will be difficult.
P.P.S. You don’t have to be an avid cyclist to enjoy this event. Many instructors will be on hand to assist with bike set-up for those unfamiliar, and if 90 minutes is too much, breaks are definitely permitted.
P.P.S. If you cannot participate, but still wish to donate, please click here and make sure to reference either Lisa Goldman or the Breathe Ride, so your contribution can count toward the total raised for this event. Thank you!

The post Please Join us for the Breathe Ride at Bay Club Santa Clara, October 18! appeared first on Every Breath I Take.

I have lived vicariously through my awesome Team Lisa representatives at several events in the last 7 months (thank you Team Lisa peeps!). The Bike 4 Breath ride was my first time representing myself. I didn’t publicize and recruit for this event because I was testing the waters, but now I’m ready for the big time.

Please support or come join Team Lisa (the whole nuclear Goldman Family will be there!) for the Bonnie Addario Lung Cancer Foundations 6th Annual Your Next Step is the Cure San Francisco, CA 5K. I have set my goal at 18 team members and $1800 in recognition of the Jewish tradition of doing things in multiples of 18 to celebrate life (the numerical value of the letters in the Hebrew word Chai totals 18, and the word Chai means life). Let’s do this – L’Chaim/To Life!

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Last weekend, Team Lisa showed up at the 6th Annual San Diego Breath of Hope run by UC San Diego. Sister-in-law Sarah Sanger coordinated the team. Sarah reports:

12 of Lisa’s friends and family members walked in the 6th Annual San Diego Breath of Hope walk. This event is sponsored by the  UC San Diego Moores Cancer Center and San Diego Breath of Hope and aims to support people living with, or who are at risk of developing, lung cancer. These organizations are committed to ending this disease and saving lives through advocacy, education and support. Team Lisa didn’t break any 5K records today, but we all enjoyed getting together in honor of Lisa and this worthwhile cause.

The team photo:

Participants included the Sangers (mom, dad, brother, sister-in-law and niece), the Unger in-laws, and long-time family friends the Reids

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This weekend, Team Lisa Goldman participated at the San Francisco “Fight for Air Climb,” run by the American Lung Association. Longtime friend Lara Williams was team leader. The team page. Lara sent us the following report:

Event was great! Super-fun, and easier than I had thought it would be. (I was told to ballpark 15-25 minutes of climbing, but I was done in 12 and change.)

Overall summary: We had 8 team members, raised over $2K, and all 8 completed the climb at a good clip (in fact, based on preliminary results I think we have 2 men in the top 100 and 2 women in the next 50, making 4 in the top 150 overall (out of 1,000+ people)). Everyone seemed to have a good time, and the post-event celebration was super: egg casseroles, sparkling wine, orange juice, muffins – not to mention firefighters everywhere you look.

The team results:

A team photo:

Many thanks to my former student Victoria for making the customized team shirts:

A couple of weeks ago, there was a Fight for Air Climb in Milwaukee. Longtime family friend Heather put together a Team Lisa at that event too:

These efforts mean so much to us. Thanks to all of the Team Lisa participants and supporters at these events.

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