Tuesday, March 31, 2015

Living On Borrowed Time....

There is a constant clock ticking in my mind.


"Living on borrowed time...."

I've passed my expiration date.


The thing that scares me most, that threatens to tear me away from my family lives inside my body.


One day my luck's gonna run out.


Ya know what sucks? Having your future torn away from you when you were just digging into your career. When things were looking so bright. Awards rolling in, people taking notice.

When you have a house full of small children counting on you.

(They're still counting on me.)

So what do you do?

You dust yourself off, take stock of what you still CAN do, where you still CAN play an important role, what dreams you STILL dare to dream.

My cancer is well controlled right now.

Right now I have time.


Right now I have time to plan for my family's future. To get things in place to take care of them when I'm gone.

(Did you know cancer is expensive?)

Life takes unexpected turns. You adjust. You make the best of it. You still dare to dream big.

This is the only life you get. Even if it is cut drastically short.

So you shift gears. And dream.

And ask for help.


Yes, you sitting at your computer, looking at your phone. I'm talking to you.

You know all those times you have read my blog and asked yourself what you could do to help?

Now's your chance.

I. Need. Your. Help.

I need you to dig down and pledge to support this dream, to support my family, to give cancer the big middle finger.

Right now.

Take out your credit card and pledge.

Every one of you who has read my writings and been touched by me baring my soul as I faced the unimaginable (your word, not mine).

You can make a difference. You can help build a future for this family.

You can help create something that I will get to be a part of for the next months and (dare I hope) few years. Something to live beyond. A legacy.


But we need you.

I need you.


Challenge your friends to give. Tell them why it matters.

Because sometimes life is super crappy and unfair and horrible. But you know what makes it bearable? The people. The people who pick you up when all is lost. The people who allow you to hope for better days. The people who give you the strength to dream.

The people like you.

Now's your chance.


Click here. Watch. Give.

Sunday, March 29, 2015

Finding Your Lung Cancer Community

In the months following my diagnosis with metastatic lung cancer, I felt so desperately lost and alone. I didn't know a single person with this type of cancer, let alone another young mom. As the fog of shock and denial gradually lifted, I ventured into the online waters of cancer groups in an attempt to find others in this same boat. First, I came across a number of blogs written by other young people with lung cancer, and I hung on every written word. Many of those same people have become dear friends to me now, and heartbreakingly some have been taken by this disease.

If you are newly diagnosed or looking to connect with other lung cancer folks, here are a few groups and organizations that have been very helpful to me in my journey, offering emotional support, companionship, up-to-date research information, and even suggestions for treatments to discuss with my doctor.


LUNGevity is the largest lung cancer non-profit, and has funded over 100 research studies. They also provide patient support through online patient & caregiver forums, an active Facebook group, and the LifeLine program that matches people with similar diagnosis to become phone friends who can call on each other and offer guidence. For face-to-face support, they host Hope Summits throughout the country, where lung cancer survivors can meet in person, hear from experts in the field, and offer peer to peer support.

Why I'm Excited About LUNGevity: I am headed to my very first Hope Summit in May! I will finally get to meet so many of my lung cancer community face to face. There is still time to sign up if you want to come, too.

Bonnie J. Addario Lung Cancer Foundation

Founded by lung cancer survivor Bonnie J. Addario, this non-profit funds an enormous amount of lung cancer research, including the innovative Genomics of Young Lung Cancer study. This first-of-its-kind trial is focused on patients diagnosed with lung cancer under the age of 40, to investigate if there are certain mutations or other similarities within this population. The Lung Cancer Foundation also hosts the Lung Cancer Living Room, a once a month support group and information session that they stream live so that patients around the globe can participate.

Why I Love the Bonnie J. Addario Lung Cancer Foundation: This organization put me in touch with some of the top ROS1 (my driving mutation) researchers for a second opinion that provided insight, information, and hope about my disease.

CancerGRACE (Global Resource for Advancing Cancer Education)

CancerGRACE is a website and online forum where patients can go to discuss treatments, side effects, and new research with other patients and caregivers. What makes CancerGRACE different from other online chat groups is that it is moderated by oncologists. The organization also hosts in-person forums, the most recent being their Immunotherapy Patient Forum in October 2014. This conference featured experts in immunotherapy presenting research and answering patient questions. Videos of the lectures are available online. I attended the Acquired Resistance to EGFR/ALK/ROS1 Inhibitor Forum in September, and I was thrilled to see the top experts in this field discussing their research and answering questions from a room full of patients being kept alive by their discoveries. Remarkable stuff.

What Make CancerGRACE special: It is run by leaders in the field, so they are able to provide accurate, timely information to patients.

LCSM (Lung Cancer Social Media)

For the twitter-savvy folks, LCSM is just the thing for you. This is primarily a twitter-based group that communicates with the hashtag #LCSM, sharing research news, personal stories, and support. Every other Thursday they host a tweetchat focused on a specific lung cancer related topic, and spend one hour in a fast and fun discussion. LCSM also manages a website that includes lung cancer facts, transcripts of past tweetchats, and a list of lung cancer blogs, something that was vital in getting me through the early months following diagnosis. I love the immediacy of blogs, the way stories are told in the moment that they happen. Blogs tend to be more raw and honest that other writing, and I appreciate that immensely.

Why You Should Check Out LCSM: Strange as it may sound, I joined Twitter solely so that I could participate in the LCSM tweetchats. They are fun and informative, and there is a great sense of community around LCSM.

Do you know of other good cancer resources? Post them below!

Originally posted at: www.curetoday.com/community/tori-tomalia/2015/03/finding-your-lung-cancer-community

Monday, March 23, 2015

Couple opening Pointless Brewery & Theatre in Ann Arbor

We got some nice press coverage for our dream project, Pointless Brewery & Theatre.

Don't let stage IV lung cancer keep you down!

Couple opening Pointless Brewery & Theatre in Ann Arbor

Want to join our Pointless endeavor? Pledge to our Kickstarter and enjoy lots of Pointless perks!

Saturday, March 21, 2015

Birthdays Take On New Meaning

I did it! I turned 39!!

That may not sound like much of an accomplishment, but the horrible statistics that come with a metastatic lung cancer diagnosis had us all believing that even making it to 38 would be a stretch.

So how does one celebrate such a milestone? For me, with a lot of reflection. I've been given the gift of time, and while my SuperDrug is doing a bang-up job controlling my cancer right now, I know my future is uncertain. Over the past few months, our lung cancer community has endured some incredibly heavy losses. Sadly, losing friends is nothing new to me anymore, but this recent string of deaths hit me particularly hard because several of them were people that I was sure would be the one to beat the odds. Young, previously in great health, with so much to offer the world, and yet cancer stole them away so quickly.

Sobering thoughts.

I have a lung cancer friend who always tells me that he looks forward to seeing me dance at my children's weddings. And every time he says it, my eyes well up with tears because I dare to hope that it might be possible.

Some days I catch myself playing a dangerous game, where my mind wanders to "what if" scenarios. What if I had known, ten years ago, that this was in my cards for the future? Would I have still gotten married and had kids, knowing that I was going to be dropping them into a horrible situation? Or would I have done the noble thing and hidden myself away, to spare others from heartache? A parent's job is to protect their children from harm; would I have been strong enough to destroy all the joy they have given me to save them from pain?

The Fault In Our Stars

 “I'm a grenade and at some point I'm going to blow up and I would like to minimize the casualties, okay?”

John Green, The Fault in Our Stars

But, of course, I can't go back and change the past. All I can do is make the present memorable for them, and plant seeds for the future. One such seed is a wonderful/crazy dream that my husband and I have nurtured for close to a decade, the goal of opening a theatre together. With my lifespan greatly truncated, we decided that if there is ever a time to make it happen, the time was now. (You can watch a video and learn more about it here: http://kck.st/1EEAQ08)

So yes, I still dream big. I dream that I might see my 40th birthday, I dream that I might plant more gardens, I dream that I might see more first snowfalls, I dream that I might guide my children through their adolescence. And some days I even dare to dream about dancing at their weddings.

But today … today I got to turn 39 years old, and that is a reason to celebrate. Happy birthday to me!

Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/03/birthdays-take-on-new-meaning

Thursday, March 12, 2015

Our Pointless Dream

Here it is, folks! As I wrote in "A Pointless Story", Jason and I have been hard at work getting things in place to open our dream business, Pointless Brewery & Theatre. (Which, as far as I know, is the ONLY such combo in existence. If you know of others, please let me know, I would love to meet the owners!)

And now is your chance to come on board and help get this up on its feet. Watch the video, check out the cool perks, and join us!

AND - all donations of $75 or more get a one-year Pointless Peeps membership, which gives you 10% off of all show tickets, drinks, snacks, and merchandise. Plus a cool t-shirt. Pretty sweet, huh?

Click on the logo below to watch:

Monday, March 09, 2015

How Cancer Changed Me as a Parent

My amazing little girls just turned four, and I was thrilled to share this milestone with them. There was a time not long ago when I doubted I would see this day.

When I was diagnosed with metastatic lung cancer in the spring of 2013, my son was 4 and my twin girls were newly 2. My daughters were still sleeping in cribs, still and diapers, still my little babies.

That summer my worldview shifted dramatically, and my view of my children growing up followed suit. Now, I no longer mourn the passing days of their childhood. Like many parents, I used to have a twinge of sadness when the little ones passed milestones, knowing that they were one day closer to growing up and leaving home. Now, instead of sadness I feel a twinge of relief and a boatload of joy, for each one is another moment that I am still here to experience. It is as if the faster they grow, the more of their lives I will get to see. As if they could only grow fast enough, they might outpace my cancer.

I was still here to see my girls learn to ride tricycles – and ride they did! First days of school, first time on the bus, first time at a movie theatre, graduating to a big kid bed, getting rid of cribs, learning to use the potty, learning to jump, learning to read, learning to write. All these are achievements not only for my kids, but for our whole family. Because we got to see each of these as a whole family.

I look at my son and I see the baby face disappearing before my eyes, and glimpses of the young man he will become peek out at me.

I see the feisty sprit of my little girl, and her focus and determination resonate in my soul; it’s the same fire that burns in me. Looking in her eyes is looking in a mirror, and I dream of the woman she will one day be.

I snuggle with my daughter, and feel her little fingers gripping mine. Her breathing shifts, her grip loosens, and she drifts off to sleep. These tiny remnants of babyhood surface and fade away.

These fleeting moments….

I remember one day when the girls were infants and Jason and I were ridiculously sleep deprived (like all twin parents) and going a little crazy (like all twin parents). I said to Jason, "Can you imagine if we had an unplanned pregnancy? That is the WORST thing that could happen to this family." He stopped and stared at me. "I can think of much worse things than an unplanned pregnancy that could happen to our family." Oh yeah, perspective. He is so good at that. Who would have guessed that a much worse thing was waiting in the wings?

I think about my young friends whose dreams of having babies have been cut short by cancer. I think of the young children whose futures have been erased by disease. I think of all the moms and dads with cancer who have left this world, leaving small children to grow up without them.

I think of all this, and I celebrate my children growing up. Because I am so proud of the people they are becoming. Because they bring me so much joy. Because I am here to experience it.

Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/03/how-cancer-changed-me-as-a-parent

Monday, March 02, 2015

Empowered Patients Change National Cancer Guidelines

I have metastatic lung cancer. Conventional wisdom says that once cancer has spread beyond the original site, cure is impossible and the purpose of treatment is to reduce symptoms and extend the patient's life. Surgery is off the table.


Except what if the cancer has only just started to spread? What if it has only set up a few metastases (called oligometastatic disease)? Could you push the envelope and try the impossible, to cure stage 4 lung cancer?

A group of patients believed that this idea was worth fighting for.

It started with lung cancer patient Chris Newman's participation in an online patient forum, Inspire.com, where she learned about quite a few stage 4 patients with a small number of metastases who had undergone surgery or SBRT (Stereotactic Body Radiation Therapy, a kind of radiation that pinpoints small tumors). These patients had enjoyed No Evidence of Disease for years. They were lucky to have been treated at top medical institutions by doctors who were willing to think beyond the dire prognosis that comes with stage 4 lung cancer. On the flip side, there were many patients on the forum who said their doctors would only treat stage 4 with chemo, regardless of the number of metastases.

Chris realized that if the guidelines could be changed to allow surgery or SBRT for more situations, more metastatic patients might be offered these treatment options. She made the bold decision to approach the National Comprehensive Cancer Network (NCCN) and propose that they change their guidelines. At worst, she thought, the panel will have a good laugh. But the idea snowballed, and a group of lung cancer patients who knew each other through Inspire formed the Independent Lung Cancer Patient Advocates (ILCPA), and they went to work. They pooled their knowledge, connected with lung cancer non-profits, and attended the American Society of Clinical Oncology conference to solicit physician support and bring even more muscle to the fight.

Fueled by passion, cutting-edge research, and Twizzlers, the team spent endless hours poring over research, compiling journal articles and a developing a proposal to change the lives of people who had been told that aggressive treatment and cure were not an option; people who had a prognosis of a year, maybe two to live.

Fate stepped in. Chris found herself sitting next to an NCCN panel member, Dr. Frederick Grannis, at a lung cancer advocacy conference. He was kind enough to review the proposal and make sure that every member of the panel got a copy of her Addendum Arguments and that the proposal received serious consideration at the panel's meeting.

I've read the complete proposal, and it is pretty brilliant.

Here are some highlights:

"The life expectancy for Stage IV NSCLC patients is only around 8 to 12 months and 5-year survival rate between 1% and 5%. While a significant portion of clinicians react to the dismal prognosis of this group of patients with therapeutic nihilism or restrict their recommendations to those found only in existing guidelines, the issue of the most appropriate treatment approach is a very personal and subjective one for the patients, who find themselves face to face with their own mortality. Treatment plans for Stage IV NSCLC patients involve personal life/death/quality of life decisions. The patient should have the ultimate right to decide optimal balance of risk, benefit and quality of life, etc., when reviewing possible treatment options with their clinician. They are deprived of this right when they are not presented with ‘all’ reasonably appropriate treatment options."


"Stage IV NSCLC patients with oligometastatic disease often are not offered, or even made aware of, the option of aggressive local treatment which may provide long term survival, or even curative benefits, by their clinicians, as current guidelines do not explicitly address this issue, despite persuasive and compelling advances".

… and then, they bring it all together…

"Therefore, given the grim prognosis for this subset of patients, possibly life extending and/or curative treatment options should be addressed in the treatment guidelines algorithms in ‘all’ instances where there is NCCN consensus that the intervention is appropriate".

So guess what…

They did it!

As of January 1, 2015, the National Comprehensive Cancer Network guidelines now include information that could dramatically change the lives of stage 4 lung cancer patients with oligometastatic disease.

And all because a group of patients raised their voices together and demanded to be heard.

On behalf of lung cancer patients everywhere, I offer my enormous gratitude to the patients, caregivers, lung cancer advocacy groups, and clinicians who supported this effort:

Chris Newman, Janet Freeman-Daily, George Haughton, Michele Taylor, Robert Young (RIP), Annika Holm, Shane Piers, Addario Lung Cancer Medical Institute, Bonnie J. Addario Lung Cancer Foundation, LUNGevity, Lung Cancer Circle of Hope, LUNGCAN (a collaborative group of 18 lung cancer advocacy organizations), David P. Carbone, MD, PhD, Joe Y. Chang, MD, PhD, Abraham Chachoua,, MD, Maria Teresa Congedo, MD, Raja M. Flores, MD, Gregory N. Gan, MD, PhD, Corey J. Langer, MD, FACP, Michael T. Milano, MD, PhD, Paul Okunieff , MD, Kenneth Rosenzweig, MD, Joseph K. Salama, MD, Alice Tsang Shaw, MD, PhD, Roman Perez-Soler, MD, Tokujiro Yano, MD

For more on this story, see "How A Group Of Lung Cancer Survivors Got Doctors To Listen" at NPR.org.

Visit the NCCN website to read the complete guidelines.

Originally posted at: www.curetoday.com/community/tori-tomalia/2015/03/empowered-patients-change-national-cancer-guidelines