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This is how I would reword Shakespeare: Nothing offends me about my life so much as the manner of my leaving it. It’s not the disease, or the timing that makes me feel that way. It’s the staggering amount of energy that is consumed as part of cancer care - energy in the form of miles driven and plastic tossed into a biowaste disposal canister. I haven’t lived an exemplary life when it comes to the amount I have contributed to landfills. I’m not even good about composting my food waste. Still, getting sick has enlarged my carbon footprint, and I’m not done yet. There’s the matter of how to dispose of my mortal remains, for one thing, plus I’m not done with blood draws and treatments. Take the simple matter of a blood draw. Initially they were all taken from a vein. Waste generated: an alcohol wipe, a rubber tourniquet, a pair of gloves, a butterfly needle with attached plastic tube, a few glass vials, and a couple of pieces of gauze topped with a bandaid. Now, however, I ...

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  tre...

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 mea...

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.'”

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?"

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 ...

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 dea...

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 ...

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 C...

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 ...

 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." Scanxiety is Rea l! 8 Ideas for Coping with the Stress of Scan Time " A study published last year confirms what all of us already know: scanxiety is real for lung cancer patients, and it negatively affects our quality of life. You know it and I...

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." Anniversaries, Cancerversaries, and Milestones of Lung Cancer Treatment and Survivorship Sharing Our Personal News About Lung Cancer " If you are a lung cancer patient or survivor who is getting periodic scans, you are guaranteed to have news from time to time. How do you share the news? Who do you share it with? What about bad news versus good ne...

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 l...

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, ...

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. Some Social Security Disability Tips for Patients with Lung Cancer

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 (...

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? What It's Like to Be in a Lung Cancer Clinical Trial - Part One, Background Information 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. What It's Like to Be in a Lung Cancer Clinical Trial - Part Two, The Clovis Pharmaceuticals Phase II Trial for CO-1686

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. Sorting Out the Stuff After a Lung Cancer Diagnosis

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. Why I Have Two Oncologists

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 Friend s 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 Cre...