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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 ...

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

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...

How many people have fully wrapped their heads around the recent change in the standard of care for advanced lung cancer? This change has rolled out bit by bit since May of 2015 (less than two years ago!) with FDA approvals of three new drugs, and now includes nearly all types of lung cancer. It’s part of the National Comprehensive Cancer Network (NCCN) guidelines for care, which means oncologists should know about it, and insurance companies should pay for it without a fight. When I look at the short amount of time in which this change has happened and the number of lung cancer patients who are potentially affected, it seems to me that this really is big, big news. I’m talking about the newest innovative treatment for lung cancer - immunotherapy. It doesn’t work for everyone - in fact, it won’t work for most of us. No one treatment yet does, probably no one treatment ever will. But 40% of patients with non-small cell lung cancer respond for a while, and 20% respond for a lon...

As a new year approaches, I have a new platform for some of my posts. I am now a Community Blogger for the Free to Breathe site on the HealthUnlocked platform. HealthUnlocked  is an international site bringing together non-profit groups dedicated to helping people with serious and chronic illnesses, and offering a place for people to connect with others, be they survivors, patients, or caregivers. While I'll be posting regularly on the Free to Breathe site, I'll also continue to post here from time to time. I still need a place to post about my knitting, and I also have some long form pieces I want to do that more properly belong here. A post about the new standard of care for lung cancer is done now, and I will put it up in the next few days. My first two posts for Free to Breathe are: A meditative piece on how I have in effect skipped ahead a generation due to my diagnosis of lung cancer, and I now stand with my elderly parents, with much the same concerns and outlook ...

Seen in a lung cancer foundation’s chatroom recently: A: I wish I had a mutation. B: I’ve got one. If you want it, you can have it. This is something we don’t talk about in the lung cancer community, at least not out loud: that we might be envious of someone else’s cancer mutation. While personalized medicine is still an ideal rather than a reality, some lung cancer patients find themselves on the frontier of a different approach to medicine, one where each person’s treatment is based on her or his disease’s genetic profile. in 2003, a medicine called gefitinib was approved by the FDA for treating lung cancer in all patients who had had chemotherapy. After additional research, this approval was rescinded in 2005, because the drug did not extend life over the population of patients as a whole. Doctors noticed, however, that the medication helped a minority of patients a lot, even as it didn’t help other patients at all. When researchers investigated why this was so, the...

Feet on the sidewalk I feel kinda sick Hands out front I need a white stick Blurred in the morning Bruised at night Falling in the darkness Could've been a fight My blind life I can’t see the road I can’t see the light  - My Blind Life by Chris Dreja, sung by The Yardbirds Those lyrics are exaggerated, but I am going blind. Thanks to rociletinib, the experimental drug I took for eight months, I have rapid onset cataracts. From Wikipedia   Fortunately, this problem can be pretty easily fixed. Massachusetts General Hospital sent all of its patients who took rociletinib and developed cataracts to a specialist from Tufts University, but we are lucky to have a very skilled eye surgeon locally. He has scheduled me for surgery as early as possible; I get my right eye fixed on July 26, and my left eye fixed on August 9. It’s a fascinating experience. The first sign was in late April, when my eyeglasses no longer corrected for distance vision....

Does it sound strange to spend a weekend with 300 lung cancer patients and caregivers? Does it sound gloomy or frightening? It turns out that if you are a patient or caregiver, such a weekend could be a highlight of your year, one filled with hope and fellowship. In late April, Robert and I set out on a two week trip that combined conference going with vacation. Our first stop was Burlington, VT, where we attended a day-long Lung Force Expo . This was an interesting day, filled with good information about managing one’s health with a serious lung disease and with information about the great promise of lung cancer screening. I was able to meet some fellow patients and some doctors who are relatively close to me in what is a terrific little city to visit. It also served as a warm up event for what was coming up next: the annual HOPE Summit put on by LUNGevity in Washington, DC. We flew from Burlington to DC, thanks to a travel grant from LUNGevity that paid for my airfare and f...

During a clinical trial clinic visit in January, my trial coordinator at Roswell Park Cancer Institute asked me if I would be interested in speaking before the FDA’s Oncologic Drug Advisory Committee about my experience as a patient taking the experimental drug rociletinib. Clovis Oncology, the company that makes and is testing the drug, was hoping to receive accelerated approval to start being able to sell this drug on the market, and a hearing scheduled for Tuesday, April 12 before this important advisory committee was key. The company was looking for patients to speak about their experience with the drug.  I immediately said yes. Such opportunities are rare, and it’s exciting to have an opportunity to be part of the important process of drug approval beyond taking a drug as an experimental subject. As a bonus, the hearing would be held in Silver Spring, MD, near where our daughter lives, and I would get to see her and her husband. In February, I talked with an executive...

There are two types of centers that treat cancer: community cancer centers, and comprehensive cancer centers. I recently had an experience that made it clear to me that if you can get yourself to a comprehensive cancer center, you will likely find that the additional travel and related expenses are worth it. I began care at a community cancer center, the Richard E. Winter Cancer Center in Ogdensburg, NY. I love this center and my doctor there, and continue to have a relationship with it - that’s where I get my bi-monthly Xgeva shot. Community cancer centers are necessary and valuable, especially for standardized treatments, but they offer little access to clinical trials and highly specialized services. I need my local center, because if I need a standard chemo treatment, it’s crazy for me to travel 5 hours one-way for the same treatment I can have only an hour from home. My doctor there is very sharp and good at seeing me and my situation holistically, but she is a general oncolo...

If there are demerit points for bloggers, I’ve surely earned quite a few by going through a clinical trial from entrance to exit without blogging about the experience at all. I will do my best to make up for this omission of potentially useful information with a synopsis of my experience. If you have decided that a clinical trial might be your best next option, the first step is finding a clinical trial for which you match the profile of a qualified participant and that is at a logistically possible location. When my search for a clinical trial began in earnest in March 2015, I knew that there were two possible drugs that might be my best second line of treatment. One drug, AZD9291, had closed its trials and was moving towards FDA approval. The second drug, CO-1686, also called rociletinib, had an open trial at Roswell Park Cancer Institute in Buffalo, NY. I met the initial qualifications and I have family in Rochester, just an hour and a half from Roswell. So, game on! How do...