Michelle Bos-Lun (D-Windham-3), is a third-term Democrat representing Westminster, Rockingham, and Brookline. She is a teacher and has worked in restorative justice.
WESTMINSTER-My phone was vibrating. “Dr. Fuld Oncology” appeared on the screen.
I was two weeks into my journey of having unexpectedly developed lung cancer as a 59-year-old never-smoker.
I wasn’t sure what to expect. Lung cancer is the biggest killer of all cancers. It causes more deaths than colorectal, prostate, and breast cancer combined. It isn’t an easy one to put in remission.
After googling and one appointment with Dr. Fuld, I knew that most people with cancer at the stage I have don’t make it five years. He had told me to “hope one of the genetic mutations caused your cancer.”
If so, effective targeted therapies would provide my best chance for high life quality and longer survival.
When the call came in, I was sitting in committee room #49 in the Vermont State House attending a single-day special meeting of the Agriculture, Food Resiliency, and Forestry Committee, on which I had served for the past year.
I took the call, slipping into an empty room which was easy to find because it was mid-November and we weren’t in session.
“You won the lottery,” Dr. Fuld told me. “You have the ALK genetic mutation.”
“What does that mean?” I replied.
He told me that I had ALK (anaplastic lymphoma kinase) lung cancer. I would have to take highly effective daily chemotherapy pills — “a targeted oral treatment” — that in 80% of cases extends survival significantly and provides a good quality of life, he said.
I asked Dr. Fuld my prognosis.
It would be almost impossible to say, because the survival rates are so good with new treatments that people are surviving many years on the second- and third-generation targeted therapies.
The data isn’t all in because so many people are surviving instead of dying, so statistics can’t accurately predict how long any one person will survive.
* * *
My type of lung cancer occurs in about 3–4% of cases among people who are mostly nonsmokers and are younger than the average lung cancer patient.
I have gone to one conference, joined groups online, and begun volunteering as a support group facilitator in an online meetup. I have made two ALK Vermont friends: One is 51, the other 38. Both are nonsmokers.
I know of a number of people who are 15 years into an ALK diagnosis and a few others who are at 20! I recently read that a study in Australia from 2004 to 2024 showed a projected median survival rate of 13.7 years for ALK nonsmokers.
That was the final piece of data I needed to decide I could responsibly make another run for re-election.
* * *
My brother, unfortunately, also has advanced metastatic cancer, and his diagnosis came a year before mine. In reading up extensively to help and support him when he was newly diagnosed, I became convinced that a fully-plant-based, whole foods diet with an abundance of fresh produce would be an effective way to help fight cancer.
He was not interested in going vegan, but I switched over fully the day I got my cancer diagnosis.
I make smoothies every morning with lots of kale, parsley, raspberries, walnuts, oats, and more. I make a batch of carrot, beet, celery, and kale juice at the beginning of the week and drink one glass every day.
I eat a giant salad every day, and my other meal is filled with cooked vegetables, tofu, or beans and some whole grain like brown rice or farro. I am eating as healthfully as possible and truly feel well. I am getting good rest at night and am full of energy all day.
I truly have never felt healthier in my life, except I have cancer.
I have had two scans so far: My baseline scan showed five impacted lymph nodes and one small nodule in my right lung, and a second scan two months after I started taking Lorlatinib showed my cancer reduced by almost 50%!
This means I am responding favorably to the medication and am likely to continue to be in that 80% of people who survive for a good long time.
* * *
I have been fortunate to have only two side effects.
I have neuropathy in three fingers in my right hand (a weird, tingly sensation accompanied by skin discoloration), and my left foot became swollen after a two-hour plane ride. Swelling with altitude changes is a common side effect, and it hasn’t fully gone back to normal two months later.
Thankfully, with tai chi and walking at least 2 miles daily, I can keep the foot swelling down.
One day I had to work on a bill presentation and didn’t have time to do tai chi or walk in the morning. When I got out of the car after returning home, my foot had returned to uncomfortable proportions. This reinforced my commitment to this daily routine. A special type of massage that addresses lymph circulation every two weeks helps, too.
A voracious reader, I have consumed a couple dozen books about cancer recently. When I learn about a problem, I try to understand it and then figure out the best plan to address it. I do this as a person living with cancer, and I do this as a legislator.
From a 23-year cancer survivor who is also an author, I learned a term that I, too, intend to embrace: “cancer thriver.”
I’m not just surviving, which for some people in some situations is a miracle. Except for my slightly swollen foot, I truly feel great. I am eating well, exercising every day, doing work I love, connecting with friends.
I did not know this would be the case, but I am thriving with cancer.
* * *
As I realized that I was a cancer thriver, I also realized that I very much wanted to run for re-election for a fourth term.
I was intending to step down and spent several months thinking that was my path, but not only do I very much enjoy representing northern Windham County in the state Legislature, I love working on my new committee placement this biennium.
I have been a member of the Agriculture, Food Resiliency, and Forestry Committee, an assignment that has shown me how well government can work.
My colleagues and I represent both parties. When we are in the House Chamber, about half of our committee’s members vote pretty differently from me on a number of important issues, but in our committee room, we talk, we listen, and we usually come to agreement.
Sometimes I move their direction, and sometimes they move mine. Occasionally we don’t reach a compromise we can all support. But it is civil, kind, thoughtful, and the way all levels of government should work.
I want to keep serving on this committee. I want to keep working on issues of food security, food as medicine, restricting rodenticides to protect wildlife, and supporting policies that can improve Vermont school meals.
* * *
It looks like I will need another biennium to revise H.613, my bill to increase police training hours and improve victim services in situations where the police are called to an incident with an individual experiencing a mental-health crisis.
I worked closely developing H.613 with the Garvey family, who lost their son and brother, Scott, in Putney when the police were called on a day when he was struggling with his mental health.
Scott lost his life. He was shot in his apartment by a trooper from the Vermont State Police.
These situations are complicated, and additional training of police, who often are the primary responders to this type of situation, could save lives. At eight required hours of mental health training for its new officers, the state is tied for the lowest number of training hours in the U.S., where 15 hours is the average instruction time required. My bill would get us up to that level, nearly doubling our mental health training and deescalation training. If enacted, this law could prevent tragedies.
H.613 is the most important bill I have worked on. I will definitely introduce a similar bill next year.
I was a volunteer educator and support-group facilitator with the Vermont chapter of NAMI (the National Alliance on Mental Illness) for many years before I was elected, and I had hoped to work on mental health policy.
I didn’t get assigned to a committee of jurisdiction, and I developed other areas of focus as a legislator, but this issue — preventing deaths of individuals when they have interactions with the Vermont State Police and preventing tragedy for individuals living with mental illness — is of critical importance. I want to make it happen.
* * *
Except for the cancer, I have never felt better. I am eating well, exercising every day, and I truly feel great.
I am grateful to be a person who gets to take advantage of scientific advances that enable me to continue my life as it was before my diagnosis. My primary treatment — swallowing three little tablets — takes less than a minute a day to complete. I am very lucky.
Last fall, I didn’t know what to expect. Now that I know I can live well with cancer, likely for many years to come, I have lots of things in the Legislature and out that will be keeping me busy. One priority? Our country in many ways is a horror show. I want to join all Americans in fighting to preserve our democracy.
And along the way, I plan to appreciate each day, each week, each victory in the statehouse, and each scan that shows my cancer is not spreading.
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