Posts

New Year, Old Dusty Blog

It’s been almost a year and a half since I posted anything here except links to paid work published elsewhere. This blog has remained in my thoughts throughout the whole period of silence. 
Silent here, not elsewhere. The past year has been full of speaking engagements, patient advisory panels for pharmaceutical companies, other words in other places. What I’ve written and said has been sincere and well-researched, but has not included some things I think about. When you are writing and speaking for pay, you aren’t really free to share everything that might be on your mind. The customers for paid pieces want them to be hopeful and encouraging, to suit their purposes.
My time and energy has also been invested in establishing a new patient advocacy group, the EGFR Resisters. Co-founders are Ivy Elkins, Jill Feldman, Teri Kennedy, Allen Lee, Ildiko Medve, and Colleen Sturdivant. Besides a website, we also have a closed Facebook group with over 900 members who share  treatment experience…

Post from Lung Cancer Support Site: Report on the Lung Cancer Leadership Conference

In February 2018, I was privileged to attend the Lung Cancer Leadership Conference, held by the Lung Cancer Research Foundation. This was the first time this conference was officially held by the Lung Cancer Research Foundation, which merged with Free to Breathe (the former organizer) in 2017.

I was able to share a room with my good friend Denise Cutlip, who has her own blog survivingit. It was a different conference from most of the lung cancer events I've gone to; most of the attendees were family members of lung cancer patients who were dedicated to raising money to fund research. There were presentations on research and current treatment paths, but the main focus was on fundraising.

I wrote a report of my experience for the HealthUnlocked.com blog, which at that time was moderated by Free to Breathe/Lung Cancer Research Foundation. Moderation of the site is changing as I write this, with the Bonnie J. Addario Lung Cancer Foundation stepping up to lead the site. In the meantime…

Post from Lung Cancer Support Site: My Transition to Chemotherapy

It's been quite a while since I updated this blog with my health status. I have had quite a chemo adventure. Here is an overview of my first four chemo sessions that I wrote for the Lung Cancer Support Site on HealthUnlocked.com.
The sh*t hit the fan after I wrote this post. I do plan to tell the tale in full here in a future post.
I'm Over in the Infusion Room, With Everyone Else "The reality is that chemotherapy is widely used, and is the first line of treatment for many lung cancer patients who lack genetic markers that would qualify them for immunotherapy or targeted treatment. To quote Dr. Jack West, a leading research oncologist who specializes in lung cancer, 'Chemotherapy is not a consolation prize.'”

Post from Lung Cancer Support Site on HealthUnlocked: Setting Goals

Wherein I ruminate about what kinds of goals are useful to someone who is dealing with serious illness. Can we get away from the "shoulds" and create new goals that are meaningful to us? What gets in our way?


Setting Goals Despite Lung Cancer

"Beyond that to-do list of the mundane, the business matters, and the bucket list is the realization that our time is finite. The imbalance between the swollen list of things that we want to do and the limited time and energy available to do them all can be paralyzing. Where do we even start?"

Post from lung cancer.net: Two Partners, Two Cancers

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Life got a bit more complicated late last summer when my husband Robert was diagnosed with stage II prostate cancer. What is supposed to be a “routine “ cancer with straight-forward treatment options turned out to be more complicated because of Robert’s ulcerative colitis. Even though his UC has been in remission for decades, various doctors threw up red flags about his preferred treatment method and we’ve had to do a fair bit of research and visit doctors in Syracuse and New York City before deciding on a treatment. 
I no longer think that there is such a thing as a “simple” cancer diagnosis.
Robert’s story demonstrates again how worthwhile it is to go to a major cancer center if you can. His cancer was downgraded by the pathologist at Memorial Sloan Kettering, making him eligible for low dose brachytherapy instead of going to daily radiation sessions for weeks and weeks. 
This post I did for lungcancer.net talks about what we have learned while coping with two active cancer diagnos…

Thoughts on Selling My Words

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I am now blogging for pay on two websites. That’s something I never expected I might do. Blogging has been a hobby and a means for learning about myself. Sometimes I find out what I really think only after I start writing it down.
If you write for pay, you have to reckon with the fact that you are giving up your rights to the words you put together. Those words have been sold and title to them has passed from you to a new owner, just like selling a used car. I tried to negotiate a deal where I could keep the rights, but that simply is not the way the world works in most cases. After thinking about it, I decided that the potential good I could do meant more to me than retaining ownership rights. The extra money could be used to travel to conferences, which are hard to afford on a fixed income. I also realized that I could be selective about what I chose to sell.
I am writing different kinds of pieces for the two sites. One wants only survivorship-type topics from me: how to deal with …

Post from lungcancer.net: Using Twitter for Connection and Information

Engrossing, fast-paced, fascinating, accepting: these are how I describe the bi-weekly #LCSM chats on Twitter. The acronym translates to Lung Cancer Social Media, and a group of advocates, patients, and medical professionals have committed themselves to hosting these hour-long discussions of important lung cancer topics. The official site: lcsmchat.com. The site has the next topic to be discussed and a list of questions that will be covered by attendees. There are also links to much other information of value: transcripts of past chats, lists of blogs, and many other resources.
Newcomers to Twitter and to the chats are often confused about how to use Twitter and participate in #LCSM. I wrote a beginner’s guide on lungcancer.net to help more people take advantage of this great resource.
Using Twitter for Connection and Lung Cancer Information: A Primer
“For one hour, patients, advocates, oncologists, surgeons, and pathologists discuss a selected topic. The group is warm and inclusive, a…

Please support the EGFR Resisters Research Fund!

To help improve outcomes for people like me with EGFR mutated lung cancer, please donate to the EGFR Resisters' Research Fund. All donations are tax deductible and are in a restricted fund with the Bonnie Addario Lung Cancer Foundation, a four-star rated charity. Thank you from the bottom of my heart!