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Showing posts from 2017

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…

Posts from lungcancer.net: Interview with Karen Loss about Finding Support as a Single Person with Lung Cancer

A recent post on a patient support site about the impact of cancer and its treatments on intimacy got a response from Karen Loss, an active lung cancer patient advocate. She said she appreciated the fact that I included a paragraph on how these issues may affect single people because this topic is only addressed within the context of partnered people. I asked her if i could interview her about how she has built a support network as a single person, and she said yes.
Karen and I covered several questions, and she wrote great answers. We posted her interview in two parts:
Building a Support Network When Your Are a Single Person with Lung Cancer: An Interview with Karen Loss
“Literally. from the day I was diagnosed, I made the conscious decision to share my journey with my entire list of friends and family… I live alone, so I knew it would be up to me to create any support system I might want or need.”

Building a Support Network When Your Are a Single Person with Lung Cancer: An Interview…

Post from lungcancer.net, Expanded: My Trip to DC for LUNG FORCE Advocacy Day

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I have a second blogging gig these days. I'm now writing for lungcancer.net, a new website that is building a community resource. The organizers have reached out to several notable lung cancer patient advocates, and I am proud to also have been asked to write for their site.
In April 2017, the American Lung Association sent me to Washington DC to represent New York State for their annual Advocacy Day project. Lung cancer patients, survivors, and caregivers from all 50 states gathered to go to Capital Hill and lobby our Senators and Representatives. We all asked for the same two things: increased funding for the National Institutes of Health, and quality and affordable healthcare for all Americans. We also had a heck of a good time.

Here is a link to the post I wrote about my experience for lungcancer.net:
Lung Cancer Advocates on Capital Hill: A Report on the American Lung Association's Advocacy Day "What is it like to lobby Congress? You want to make a good impression, so bu…

Blog Posts for the Free to Breathe Patient Support Site at HealthUnlocked.com: Information on Money, Scanxiety, and Sex

I dig into big issues at the Free to Breathe site from time to time that are the type you talk about one-on-one with a close friend rather than something you might talk about in casual conversation. (Although maybe anything related to cancer isn't a fit topic for casual conversation...) These are three recent posts of which I am quite proud.
Some Social Security Disability Tips for Patients with Lung Cancer "If you are diagnosed with lung cancer and you are still working, one of your first questions will be “Are my working days over?” Everyone with advanced disease must face this, and even people with early stage disease can find themselves contending with permanent debilitating side effects from treatment." https://healthunlocked.com/freetobreathe/posts/135097082/some-social-security-disability-tips-for-patients-with-lung-cancer?popup=1&exit=0&utm_source=anita&utm_campaign=social-security-tips&utm_medium=social

Scanxiety is Real! 8 Ideas for Coping with the…

Blog Posts for the Free to Breathe Patient Support Site at HealthUnlocked.com: Survivorship and Support

I continue to blog at the Free to Breathe patient support site, and help to build a supportive community for lung cancer patients, survivors, and caregivers. Here are four recent posts about issues of survivorship and support:

Anniversaries, Cancerversaries, and Milestones of Treatment and Survivorship:
"I opened my 13th bottle of Tagrisso last weekend, marking a full year of treatment with this very new T790M and EGFR inhibitor. It’s been a great year, full of love and adventures. I feel like celebrating, even though celebrating a milestone with a lung cancer treatment may not be everyone’s idea of a good time."
https://healthunlocked.com/freetobreathe/posts/135032270/anniversaries-cancerversaries-and-milestones-of-lung-cancer-treatment-and-survivorship?popup=1&exit=0&utm_source=anita&utm_campaign=cancerversaries&utm_medium=social

Sharing Our Personal News About Lung Cancer "If you are a lung cancer patient or survivor who is getting periodic scans, you are …

Hope Means Different Things to Different People

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May is Lung Cancer Hope Month. I am celebrating hope in my own way this month: by purchasing and processing a fleece.
Making yarn from raw wool seems to me like an ultimate achievement, and it is one that has intimidated me. Last year at Maryland Sheep and Wool, my daughter Ana took the plunge, buying a gorgeous clean and subtly colored fleece from Raja Farm of Lincoln, MA. Later we met up with Clara Parkes of knittersreview.com, and we showed her the fleece. Clara was very complimentary, ooo-ing and ahh-ing in a most satisfactory way, and said that Raja Farm is renowned for its beautiful, high quality, and easy to spin fleeces.
This year, Ana insisted that it was time for me to buy my first fleece. After we arrived at Maryland Sheep and Wool on Saturday May 6, we made a beeline for Raja Farm. Ana bought two fleeces and I chose my first fleece. Actually it’s a half fleece, but it’s still 2.5 pounds of wool, and it will keep me busy for quite a while.
The fleece may have looked gorgeo…

Two Communities Mourn Their Lizzie

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On Saturday, March 4. 2017, Robert and I drove north to attend Elizabeth Dessureault’s funeral. Elizabeth was a leading light of the lung cancer advocacy community, and her death a week earlier had shaken a wide circle of people to their core, including me. When I found out that her funeral would be held in Cornwall, Ontario, less than two hours from my home by car, I realized that I had to attend to represent all those who had met her or followed her blog and Facebook posts.
To encounter Elizabeth was to love her. Diagnosed with lung cancer only two years ago, she had a sunny disposition and a compelling story. In her first year of marriage to Dax and 5 months pregnant, she found out that she had lung cancer. She was able to go on chemotherapy and keep her baby alive, giving birth two months early to a little boy they named Jack. She had genetic testing of her cancer and discovered she had the ROS1 mutation. She went on to take targeted therapy, enrolled in a clinical trial, and had…

Social Security Disability Tips at Free to Breathe Site

I've published a new post on Social Security Disability information at the Free to Breathe site on HealthUnlocked. This is important information for anyone facing a lung cancer diagnosis, or diagnosis with any serious disease.

https://healthunlocked.com/freetobreathe/posts/135097082/some-social-security-disability-tips-for-patients-with-lung-cancer?popup=1&exit=0&utm_source=anita&utm_campaign=social-security-tips&utm_medium=social

Knitting Blog: Still Knitting Sweaters

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A new sweater came off of my needles and onto my back, and I’m happy to report that I was able to finish this one in early December, in time to actually be used this winter.





I started this sweater last summer when my vision was deteriorating day by day due to rapid onset cataracts. One day I could no longer knit socks because the stitches were too small for me to see well, and I needed a project using larger yarn on larger needles. I kept trying the sweater on as I knit it and it seemed awfully snug, but denial was on full display as I kept telling myself everything would be OK - “It will block out to size.” Ha! Those famous words have doomed many a knitting project to failure. After I had knit approximately half of the sleeves, denial no longer worked. They were so snug, I could see my skin through the stitches. So I ripped back half of a sweater to the beginning, and cast on again, this time two sizes larger to accommodate both a gauge discrepancy and my need for (literally) more b…

Two Blog Posts at Free to Breathe/HealthUnlocked: What It's Like to Be in a Clinical Trial

Another two-part series, this time looking at what it's like to be in a clinical trial. The first part covers some basic information about clinical trials in general: what are the different types of clinical trials? What do they require? Who pays for them?

https://healthunlocked.com/freetobreathe/posts/134914585/what-its-like-to-be-in-a-lung-cancer-clinical-trial-part-one-background-information?popup=1&exit=0&utm_source=anita&utm_campaign=clinical-trial1&utm_medium=social
The second part describes my experience in a phase II trial for an experimental drug. I have talked about this trial in a previous post on this blog, but this piece has been freshly written.
https://healthunlocked.com/freetobreathe/posts/134948806/what-its-like-to-be-in-a-lung-cancer-clinical-trial-part-two-the-clovis-pharmaceuticals-phase-ii-trial-for-co-1686?popup=1&exit=0&utm_source=anita&utm_campaign=clinical-trial2&utm_medium=social

Blog Post at Free to Breathe/Health Unlocked: Sorting Out the Stuff after a Lung Cancer Diagnosis

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The weight of a lifetime's accumulation of stuff may seem especially heavy when you realize in your gut that your life is finite - and that someone else is going to have to deal with all that stuff some day if you don't.

This post has been one of my most popular at the Free to Breathe patient support site.

https://healthunlocked.com/freetobreathe/posts/134866142/sorting-out-the-stuff-after-a-lung-cancer-diagnosis?utm_source=anita&utm_campaign=sorting-out-stuff&utm_medium=social

Blog Post at Free to Breathe/HealthUnlocked: Why I Have Two Oncologists

I see both a very smart general oncologist who practices at a local cancer center and a very smart research oncologist who practices at a major cancer research hospital. I talk about why in this post.

https://healthunlocked.com/freetobreathe/posts/134727203/finding-support-as-a-lung-cancer-patient-reaching-out

Finding Support as a Lung Cancer Patient: New Posts at Free to Breathe

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The question of where we can find emotional support as lung cancer patients is a huge one, and I break it down into two sections in two blog posts this week for the Free to Breath lung cancer patient support site.

We reach out for support first from family and friends. There are caveats, however - they are also having a difficult time with your illness, and maybe you can't talk with them about everything you are thinking about, or discovering.

Finding Support as a Lung Cancer Patient: Family and Friends














Photo credit: Creative Commons CC0 Public Domain image from Pixabay
In part two, I discuss places to find support if you decide to reach out beyond family and friends: phone calls with other patients, church, support groups, conferences, and counseling.

Finding Support as a Lung Cancer Patient: Reaching Out














Photo credit: Unmodified image by Colin Gray, taken for the Govanhill photoshoot at the Arches, Glasgow, licensed under terms of Creative Commons Attribution 2.0
May we all find s…