Over $80,000 Raised for Lung Cancer Research!

Friends and Family,

The results are in, and our lung cancer research fundraiser was far more successful than I could have ever imagined. Including the matching donation from our anonymous donor, 158 people contributed. We raised $40,200!

And I can’t thank Sally Rudney’s family, who supported the Sally Rudney Memorial Fund. THEY HAVE MATCHED OUR ENTIRE DONATION, dollar-for-dollar. That means that together, we raised $80,400 for lung cancer research!

The amount puts the EGFR Resisters over the fundraising goal of $400,000, which is enough to fund two more research grants that benefit people with the EGFR mutation, like me.

You can still donate for the next round of funding projects, and your donation will be doubled until the Sally Rudney Memorial Fund has been successfully depleted. Here’s the link: https://fundraise.lungevity.org/index.cfm?fuseaction=donordrive.personalCampaign&participantID=73342

Thank you to everyone who contributed to this amazing project. You are making a difference!

Love,

Dann

Update on Fundraising for Lung Cancer Research

Friends and Family,

I’m thrilled to tell you that my lung cancer research fundraiser has been a fantastic success so far. It’s been a week since we started fundraising and we are already over TWO-THIRDS the way to reaching my $10,000 Goal! Help push us over the top with your donation. Remember, whatever you donate will be QUADRUPLED!

This donation is tax-deductible to the extent allowed by law. Also keep in mind that some employers will match your donation. Imagine that you would then be octupling (is there such a word?) your donation! If you don’t ask, the answer is always no.

Thank you so much to all who have contributed so far. You are helping move lung cancer research forward at a time when new advances are happening faster than even most doctors can keep up with.

Here’s the link: https://fundraise.lungevity.org/index.cfm?fuseaction=donordrive.personalCampaign&participantID=73342

Love,

Dann

Give to Lung Cancer Research and Your Donation will be Quadrupled!

Friends and Family,

I’m raising money for lung cancer research, and your donation has never had the opportunity to pack such a wallop. That’s because whatever you donate will be QUADRUPLED! For example, if you donate $100, then $400 will go to lung cancer research.

Here’s how it works. An anonymous donor has agreed to match any donations you and I raise together up to $10,000. When the donations are finalized and turned in to LUNGevity, the anonymous donor will double it, turning into $20,000. Then the Sally Rudney Memorial Fund will double THAT donation, turning it into $40,000!

The research is being sponsored by the EGFR Resisters in conjunction with LUNGevity, and the funds go through LUNGevity. The EGFR Resisters direct the research dollars to grants that have the potential for the most impact for people living with the EGFR lung cancer mutation, like me. This work could have a direct bearing on how long some of us live.

I know that good work is being done because I have been involved in one of the research grants. I reviewed clinical trial protocols and recommended changes, and I rewrote the informed consent document to make it was readable by a lay person. Patients direct what research will be done and how it will be carried out.

 I couldn’t be more excited by this opportunity. I hope you are as well. My goal is to reach $10,000 (before any matching funds) by my birthday, April 23rd. That gives us 30 days!

Here’s the link to the donation page: https://fundraise.lungevity.org/index.cfm?fuseaction=donordrive.personalCampaign&participantID=73342

Thank you for anything you choose to contribute to this cause that is so near and dear to my heart.

Love,

Dann

Think Treatable Mutation

Friends and Family,

Things have evolved pretty quickly. First, the non-existent pain in my cancerous rib went from zero to sixty in the middle of a game of golf. I made it through the game, but pain has been a problem for the past week. I activated the referral that I delayed two months ago for radiation. The radiologist told me that the T-4 vertebrae is also involved, and apparently the cancer is pushing on a nerve. I’m now on steroids to shrink the swelling to take pressure off the nerve, and hoping it kicks in soon. I can’t tilt my head to look down at my phone or read a magazine, or bend over to reach into a shelf, and I can’t do a thing to help around the house.

This is bringing flashbacks to both Genevieve and me of when I was in chemo (both times) and she had to do everything. I’m appreciating just how much work is involved now that she has to do everything again, and she is appreciating how much of the work I’ve taken on around the house since I semi-retired last year. We each found a little gratitude. But that’s enough of this lesson, thank you. We’d both rather go back to our normal give and take as soon as possible.

I had my pre-radiation appointment, which is called a “simulation.” They had me lie on a bean bag on the CT table, then vacuumed the air out of the bean bag so that it retains my body shape. They set it aside for me, so that every time I come in I will lie down and be in almost exactly the same position. After they scanned me, the tech gave me five tiny tattoos. Along with the two from my first time having radiation eight years ago, I now have seven tats. Does that qualify me to be a Millennial, or is it just proof I’m from Oregon? There is one on each side of my rib cage, and three down my chest. They will use these to line up the lasers, so that when they zap me it will be in exactly the right spot each time. We’re hoping to hit close enough to the spine to kill the pain, but since a vertebrae is involved, and the spinal chord is in the middle of the vertebrae, there is a “less than one percent chance” of neurological damage. The radiologist considered that insignificant. Us, not so much. But the alternative of waiting until a new treatment kicks in and hopefully killing off the cancer in the right spot is even less desirable.

So far, this has not been as entertaining - or embarrassing - as when I had radiation to my hips. Click HERE to read that story. Meanwhile, between bulging ‘roid-fueled muscles and the tattoos, this cancer is apparently intent on turning me into a badass.

Representative image only. Actual results may vary. Considerably.

Representative image only. Actual results may vary. Considerably.

It took daily MyChart messages of increasing forcefulness for a week just to get the biopsies ordered, but yesterday (finally!) I had both the tissue and the liquid biopsies. Since the lymph nodes are close to the surface, they were able to guide the needle with ultrasound in real time rather than CT-guided. The lymph nodes were between my carotid artery and jugular vein. I tried to get Genevieve to take pictures, but once they had a needle near my neck she was looking the other way. I felt fortunate that I had to turn my neck toward the video screen, so I got to watch the whole procedure close-up. The radiologist was surprised I looked. Why would I not want to watch? It was fascinating, and gave me a lot of reassurance that they took good samples. Not only that, but this is one of those ultra-intense experiences in life. Why would I not want to be fully present and aware? I’m making the most of this.

Here’s as much as Genevieve would capture in a picture:

Dann Lymph Node Biopsy.jpg

Once that was done, we went to the outpatient lab to get the liquid biopsy done. One of the perks of doing them in the same day was that the locations were a tram ride apart. You’ve got to stop and smell the roses along the way, right? Living life to the fullest! This was our view:

Now we’re at the point where the rubber meets the road. We should get liquid biopsy results back in about a week. Tissue samples may take 2-3 weeks. If you were thinking of sending thoughts and/or prayers our way, this would be a very good time. The outcome we are hoping for is a treatable mutation. Ideally one with a treatment that has already been approved. If not, we’re definitely open to a clinical trial.

Think treatable mutation.

Love,

Dann

Lung Cancer Research Funding

Friends and Family,

It’s Lung Cancer Awareness Month, so I wanted to highlight the eye-popping discrepancy in how our federal research dollars are allocated for lung cancer compared to other cancers. Why does this imbalance continue year after year?

I made this video a year ago, and used statistics gathered from the Lung Cancer Alliance website, which is now the Go2 Foundation.

Love,

Dann