Kevin Brumett 11/29/77-5/28/09

Yesterday morning, my friend Kevin Brumett lost his battle with lung cancer at age 31.

I met Kevin last August, when we worked together on the Shine a Light on Lung Cancer Vigil Committee. When I met him, I couldn't believe that the picture of health and vitality and optimism before me was one year into an advanced lung cancer diagnosis.

He was truly the nicest guy you could meet, always putting others before himself and I can't begin to express my sadness at this senseless loss. Not that it should matter, but Kevin never smoked. He was athletic and healthy, fit and trim. He was your all-American guy and he got lung cancer at age 29.

His smile lit up every room he walked into. His presence was so strong, so powerful and so positive, I can still feel the warmth of his smile even now.

He is no longer fighting and is no longer with us in body, but his indomitable spirit will live on.

RIP, Kevin. We will miss you terribly. You will never, ever be forgotten.

Help Me Live: 20 Things Cancer Patients Want You To Know

I had the pleasure of meeting Lori Hope last May, when I attended the first Lung Cancer Advocacy Summit. A 7-year lung cancer survivor and author of the book "Help Me Live: 20 Things Cancer Patients Want you To Know," Lori is an absolute doll.

Lori is one of those amazing people who's both spiritual and down to earth, passionate but gentle, sweet but assertive, always questioning, never arrogant, with boundless energy and a wonderful open-mindedness. I've so enjoyed our phone and email chats over the past few months and she's been a complete inspiration to me over the past year in terms of what you can do through the power of the written word - even if you don't have a book contract or journalism assignment.

She does happen to have both of those - she was a former medical reporter, has a blog on Care Pages and wrote her fantastic book mentioned here in 2003 after surviving her lung cancer diagnosis.

This book is a must-read for anyone who's been touched by cancer and wants to know how to talk to your loved ones, what to say and what not to say. For friends and family members, it's such a great guide for what to do in unchartered territory. Most of us have not had a lot of experience with cancer, and when someone is diagnosed, it's like a kick in the stomach - mostly for the patient, but also for the loved ones, friends and family, even work colleagues.

The book is beautifully written and I recommend it to anyone who's been dealt that blow themselves - either as a patient or someone close to a patient. You'll be moved by the stories inside and you'll feel a little better prepared when it comes to talking to and helping the cancer patient in your life.

You can order it at Amazon and other online booksellers as well as at bookstores.

Boston Pops "Baseball Music"

Saturday night, Chuck and I joined Judie Toti and her husband Norm for a night at the Symphony to see The Boston Pops. This is actually our second visit to Symphony Hall together, the first time to see Bernadette Peters, which he agreed was "magnificent."

That's one of the things I love about Chuck. He'll go see Bernadette Peters with me and love it. He raved about Mama Mia. He adored Rod Stewart. He's got a chick side to him that I can totally date, although I wouldn't tell him that.

So night two at Symphony Hall was baseball music. As someone who I think actually might have an addiction to the Boston Red Sox, I thought he'd love it. And he did, mostly.

For the first half of the concert, Pops conductor Keith Lockhart decided that we Red Sox fans needed to "eat our vegetables" and listen to a 20-minute Menndehlson violin piece before being allowed to hear "Take me Out to the Ballgame" and various baseball themes from Broadway.

I thought that was sort of paternalistic of him. Like "we'll let you listen to your populist music once you listen to music that's good for you."

The audience was confused. There they were, all decked out in their Red Sox jerseys waiting to hear "baseball music" - whatever that really is - and they had to listen to real symphony stuff. With movements and "false endings" and everything. Chuck sighed a lot. After all, their violin soloist was no Bernadette Peters in a sewn-on beaded gold dress.

Maybe Lockhart won some of them over and they'll become season ticket holders for Brahms, Mozart and more Mendehlson concerts. Maybe not. Luckily, the second half of the show was everything you'd imagine, including video screens of famous Red Sox moments and even big-screen fireworks and special effects.

I'm tempted to write Keith Lockhart an email to ask him about his paternalistic motives, but part of me thinks I needed a little broccoli with my mac 'n cheese.

Tell Oprah About Lung Cancer!

The Bonnie J. Addario Lung Cancer Foundation is sending a six-foot tall letter to the Oprah Winfrey Show imploring Oprah to dedicate a show to our common cause and to shine a light on the disease.

The huge (literally) letter is schedule to arrive to Oprah on May 21st.

You can help!

1. Please log on to https://www.oprah.com/plugform.jsp?plugId=220 either late Wednesday night or FIRST THING on Thursday morning and pour your heart and lungs out about WHY you want to see Lung Cancer “talked about” on her show. (You will have 2000 characters).

2. We don’t want to tell you what to write and each email should be different.

3. Just mention that you hope she’s had a chance to read Bonnie J. Addario’s BIG letter.

If you like, you can send the Addario Foundation a copy of what you wrote.

Thank you in advance, for giving it a go! It’s time for Lung Cancer to hit the airwaves in a BIG way.

Note: If, for any reason, the above link doesn’t take you to the “WE HEAR YOU: OPRAH’s MAIL” page…just go to www.oprah.com…you’ll find it.

Please write to Oprah on Thursday, May 21st ,and make Lung Cancer the headline it should be every day.

Boston Advocates Group Picture

Here's a picture of some of the fabulous Boston-area lung cancer advocates after our "meeting of the minds" last week at Meryl's house.
Here's hoping we can do great things together!

My Mom's Letter

After my letter to the Globe was published last week, something amazing happened. I remembered that my mother had also written a letter to the Globe, the night before her stroke, on October 2, 2007. It was in response to this article:

http://www.boston.com/yourlife/health/articles/2007/09/30/cancer_scares_grow_as_screening_rises/

That night in October, she emailed her letter to me to see what I thought about it. Last Saturday, a year and a half later, I realized that I had saved it in my inbox.

After re-reading it (the day before Mother's Day) I truly believe it was shown to me as a gift from her, to help me focus my advocacy efforts, to be reminded of how she felt when she was diagnosed with lung cancer - as my friend Lori says, when she was punched with her lung cancer diagnosis.

I wanted to share it here to share how she felt back then. It's a beautiful letter, and it makes me realize that if she was here today, she'd be right beside me in the fight against lung cancer. She was only 6 weeks into her diagnosis and she was already acting as an advocate, emailing letters to reporters, trying to do what she could to fight against the awful disease that was taking her life.

For the record, her letter was never published and the writer responded with a cursory 'thanks for writing but there's nothing I can do' message.

Here's her letter:

Scott-
I read with horror your article on cancer scares. That poor Jane Lee did get a scare, because she had a tumor that might have been cancer that had to be removed, and also got something many people with cancer would trade everything they have for: proof, corroboration that she does not have cancer. She is certified cancer free, while most women with ovarian cancer, as your article states, only learn about their condition when it is too late, because it is undetectable.

So are many other cancers, but the most egregiously unscreened cancer is lung cancer. Usually, the cancer grows undetected in the lungs, which have no nerve endings, and cause no pain until the tumors have metastasized into the lymph glands or other parts of the body. Most lung cancers that are discovered early are only discovered accidentally, while looking for something else.

Every year over 200,000 people contract lung cancer and every year over 160,000 people die of lung cancer. There is no screening.
More women die from lung cancer than from breast cancer. Yet there is no screening. We do not even know that we are at risk.

In case you are wondering, I am one of those women, 58 years old, otherwise extremely youthful and healthy who just found out that she has advanced stage, inoperable lung cancer. Tell poor Jane that she should be on her knees every day thanking the almighty that she is cancer free.
She is so lucky, and yet all she can see is that her very concerned and thorough doctors had the courage to look at all inevitabilities and prove that her tumor was benign.

Scott- If you want to do a true service to the Globe readers, you will get educated on the subject of lung cancer and help expose the sad, but undeniable fact that there is no screening for lung cancer and that there is little or no awareness on the part of most women that lung cancer kills more of us each year than breast cancer. That it is often viewed as a preventable disease, caused by smoking, sometimes causes people to accept their death sentence as inevitable.

I smoked at one time, just like my mother, father, grandmother, doctor, boss, and co-workers, and most of my friends. We smoked in hospitals, at the workplace, in restaurants and at family gatherings at schools in the teacher's room. And yes, when the pressure to quit was great enough, about 20 years ago, I did quit.

Lung Cancer Organizations are expecting an explosion in the number of lung cancer diagnoses over the next few years as the baby boomers age. Please understand that articles like yours could work against adding screening for this deadly disease.
And by the way, you will hear some of the same arguments against testing, against lung x-rays and CT scans, but what the heck, it is only a chance to prove you don't have the disease. I suffer my yearly mammogram with nary a positive result, have annual PAP smears with only an occasional second look, but do so willingly in order to try to catch the deadly cancer early, while it is still treatable. Those cancer scares are really cancer free certifications that any cancer patient would trade anything for.

Regards,


Kristine Matson
Cancer Survivor.

So many lung cancer advocacy groups...

Last night, one of our fabulous Boston lung cancer advocates, Meryl Bralower, invited a group of us into her home to meet with Susan Mantel and Gretchen McGarry of Uniting Against Lung Cancer, formerly known as Joan's Legacy, to see what we might be able to do together in our community to raise awareness and/or money for lung cancer.

A few weeks ago, I traveled to Dallas for the National Lung Cancer Partnership's 2nd annual Lung Cancer Advocacy Conference.

In late June, I'll be helping to create a lung cancer booth at the Boston Health and Fitness Expo with the Lung Cancer Alliance - as well as working on the 2nd annual Shine a Light on Lung Cancer Illumination Vigil in November.

In November, Boston has a Lung Cancer Walk, which benefits Lungevity, another lung cancer foundation, and I'll be attending that.

Recently, I was telling everyone about the new OPI nail polish "Breathe Life" which was the result of the hard work of a California-based group called The Lung Cancer Foundation of America.

My dear friend and fellow advocate Lori Hope is on the board of a fantastic lung cancer organization based in the San Francisco area, one that has done a large public awareness campaign about CT screening, the Bonnie Addario Foundation.

Another friend and advocate, Tracy Sestili created a foundation in memory of her mother, The Beverly Fund.

And really, there are many, many others.

When it comes to lung cancer advocacy, there's no shortage of worthy, well-meaning organizations and foundations to support. The difficult part is choosing one to stand behind. To be honest, I really don't want to have to "choose" one. I intend to support as many as I can, in different ways.

But at the end of the day, I have a concrete goal, which is to raise at least $100,000 for lung cancer research in the next 12 months. Sadly, I can't get them all to work together, so I'll have to choose one or two for which I will actively fundraise and focus my energies.

It's a tough decision. I'm trying to do due diligence. I'm researching different organizations. I want to support a mission that my mother would have stood behind. I want to be practical and make sure I'm not setting myself up to work alone in an uphill battle.

I know I'm not going to please everyone. I hope the ones I disappoint understand.

I will be seeking guidance from my mentors and friends, and I will pray to my mother to help me make this decision. I know one thing. I can't stand back and "want" to raise money for lung cancer. I have to do it, and soon.

Julia

What a week in online advocacy

I've been so busy I haven't had a chance to post about this yet, but it's been an exciting week in lung cancer advocacy - at least for me! After Boston Red Sox Commentator Jerry Remy announced that he has lung cancer, I wrote a letter to the editor at the Boston Globe and it was published last Saturday.
It was titled "Remy's Diagnosis Brings Lung Cancer Into The Open"

Immediately, people emailed in with their support of Jerry and agreed with me that lung cancer patients often hide in shame because of the smoking stigma, and that it's one of the great shames of this awful disease.

Then, on Tuesday, a REBUTTAL to my letter was published, entitled "Let's Be Clear on the Causes of Lung Cancer."

It was written by Jane Appleyard Allen, who feels very strongly that cigarettes are largely to blame for lung cancer - something I don't entirely disagree with - but her letter spurred twice as many responses as mine from lung cancer survivors and family members writing in to tell the writer (correctly so) that she was perpetuating the smoking stigma that has caused so much harm to those of us who've been touched by the disease.

She not only heard from never smokers who have late stage lung cancer, but former smokers like my mother who don't want to face judgment and a lack of compassion when they're in the fight of their lives against a relentless disease. So many heartfelt replies poured in, and the writer herself responded to say that they had made her think. She had been moved.

With her reply, I developed a new respect for Jane Allen. I think that we all share a similar view. Those of us whose experience with lung cancer also includes an experience with cigarettes wish that cigarettes had never touched our lives. We'll never know for sure whether it was the cigarettes - or just a genetic pre-disposition that contributed to ours or our loved one's lung cancer. As Suzanne Dahlberg, an advocate friend and Dana Farber cancer researcher aptly said , cigarettes are not a cause of lung cancer. They are are a "risk factor."

But at any rate, I think it can safely be said that most of us in the lung cancer community hate cigarettes. We just hate the smoking stigma that hovers like a black plague over our loved ones even more.

Changes to my blog

Hi there,

For a long time I've been making updates to my mom's Care Pages as a sort of "blog" as well as updating my Facebook and Twitter feeds with the goings on in my life, but I've decided to merge those into one with this blog.

With this blog, I'll be posting the latest info on my advocacy efforts, stuff being done in my mom's memory, as well as general goings on in Boston and the world that I find interesting. (including great deals and coupons - as that is another passion and part of my "real job.")

So, just wanted to make that announcement. I've slightly changed the title of the blog to reflect that it's no longer just a marathon training blog, but a lifestyle blog as well.

If you have any comments or questions for me, you can always feel free to email me at jgaynor711@gmail.com.

Thanks for reading and I hope you enjoy my blog!

Mom was remembered last night

Last night I went to Raytheon in Andover for the capstone ceremony for the Stand and Deliver mentoring program.

18 months ago, they created a new addition to the Stand and Deliver Program in my mom's name called the "Kristine Matson College Bound Program." Unlike the traditional Stand and Deliver program,which had paired Raytheon employees with the younger students to prepare them for the MCAS exam, this program matches Raytheon employees with the Advanced Placement Calculus students to help them become even better prepared for college.

Last night, a past student named Rueben spoke about how he'd come from the Dominican Republic to Massachusetts only 5 years ago, speaking no English, and last year he scored a 5 out of a possible 5 on the AP Calculus exam. This allowed him to place out of two semesters of college math, and as he so wisely said "he didn't have to pay for those two classes, either." He's a student at WPI now and will be doing an internship at Raytheon in the robotics division this summer.

With the incredible devotion of my mom's friend and Lawrence High calculus teacher Anne Chay, as well as Raytheon co-ordinator Terri Munson, this program has grown to include 100 students this year.

Last night, I presented an award in my mom's memory, the "Kristine Matson Unsung Hero Award" to Arlyn Javier, who, like my mom is always helping others and holds her own in male-dominated math classes.

It was awe-inspiring to see such good work being done at Raytheon, where my mom worked for 16 years, and to see the wonderful collaboration between the Lawrence High students and the Raytheon engineers.

My mom would have been so proud to have her name be a part of something so inspiring.

(the blurry picture posted here is my mom and her Stand and Deliver mentee Elizabeth)