seven.

Today marks 7 years of (knowingly) living with metastatic lung cancer. 7 years since I was told I had 8 months left.

It also marks 78 days in lockdown because of Covid-19.

Why don’t I count the cancer life in days? If I did it would be 2,557. That’s a lot of days.

Things are bumpy on this roller coaster. My latest scans showed likely progression in both the brain and lungs, so we are mulling over next steps.

I’ve never been good at predicting the course of events - I never would have imagined, 1 (or 7) years ago what today would be like.

So, I hope to see you all back here when I write “eight.” Let’s hope we will find that things are sorted by then: vaccine widespread, lives calm, bellies fed, roofs over heads, justice served, and cancer cured.

six.

“In five hundred twenty five thousand six hundred minutes.
How do you measure a year in a life?”
- RENT

I made it another year with metastatic lung cancer.

The past 365 days have encompassed....

A Phase II clinical trial
Brain surgery
Brain radiation
Brain swelling
Months of steroids
An Expanded Access clinical trial
A Phase I/II clinical trial
Bone radiation
Countless MRIs, bones scans, PET scans, EKGs, echocardiograms, and blood tests.


It was a tough year.


The past 365 days have also encompassed...

A road trip to Minnesota
Celebrating my parent’s 50th wedding anniversary
Seeing my eldest enter his final year of elementary school
A family visit to the Holiday House
A dreamy family vacation to California
My 13th wedding anniversary
Girl Scout camp with my daughters
A fancy trip to New York
Countless family dinners, holidays, scraped knees, homework sheets, movies, and school pick ups.


Strolling through my notes from the past year left me marveling at the juxtaposition of the monumental with the mundane. Surgery appointments and swimming lessons, PET scans and play dates, bone rads and birthday parties.

Raising young kiddos while living with metastatic cancer - while incredibly difficult - is also what keeps me grounded in regular life when it feels like everything is spiraling out of control. Regardless of how I’m feeling physically or my fear-addled mental state, they still need dinner, and rides to activities, and baths, and snuggles, and help sounding out words, and have questions about how everything works, and need help finding their lost shoe, and and and.

So kiddos, when you are reading this one day, know how much your regular day-to-day stuff meant to me, and how it kept me sane (while sometimes driving me crazy). You made the ordinary extraordinary, and kept me going when it all felt like too much.

“The longer I can put up with this, the longer I get to stay with Jason and the kids.”

“This is the life I’m trying so hard to stick around for.”

Catching Lightning

These past two months of treatment on my fancy new clinical trial drug have passed fairly uneventfully. Side effects here and there, plus massive amounts of travel, but all in all not too much to report. Mostly, I’ve just been trying to convince myself that everything must be fine, since I feel fairly decent.

But now scan day, April 8th (our 13th wedding anniversary) keeps marching closer, and no matter how hard I dig in my heels and try to make the world stop turning, the calendar pages continue to flip. Time for me to step up and face the truth that the scan report reveals.

The gravity of these upcoming scans reminds me of my August 2013 scans (on Jason’s birthday). Those were my first scans after starting chemo, and we knew that the report would largely foretell whether or not my cancer would respond to treatment. And the report was remarkable.

But that was my first line of treatment. I am on my ... fifth (or maybe sixth?) line at this point. The odds of a good outcome go down with each one, meaning I am now deep into the unenviable category of the “heavily pretreated” patient.

But, I’ll try not to think about the outcome until I have to.

For now, I’ll keep savoring all the little joyous occasions ... trying to hold on to these ephemeral moments that slip through my fingers like sand.

California Dreamin’

Jason and I got married in a perfect, tiny ceremony on the beach in San Clemente, California, then honeymooned in nearby San Diego. On each anniversary, we show our kids the wedding video, and every year they ask if they could see where we got married.

Our little crew has never been on a family vacation. Yes, we road trip to Minnesota every summer to see my parents, and while I find that wonderfully relaxing, it’s not really a family vacation.

There is an improv festival coming up in San Diego, and the League of Pointless Improvisers (the Pointless cast) got accepted to perform in it.

...do you see where I am going with this?

These past few months have been rough. Frankly, these past 5.5 years have been hard, but the last few months have been particularly challenging. And the road forward remains unclear.

So we decided, come hell or high water, we are going to California!

Jason pointed out to me that Disneyland and LEGOLAND are in California, too. I’m well aware what a challenging time this has been for Jason and I, but I’d be a fool if I didn’t recognize how hard this has been on the kiddos, too. They deserve some fun.

—

I spent today anxiously waiting for my MRI results, the first MRI after 6 weeks on my fancy new TKI drug, Lorlatinib. It is my third TKI, and I’d be lying if I said I wasn’t getting nervous that I’m on #3 of the 4 that have been developed for ROS1 (and #4 is only up to phase 1 in clinical trials). I called the cancer center and left a message, saying I was waiting for results. They said they would call me back when my doctor was available.

So 2 hours later I called again (I am bad at waiting), and they said they know I called, and they will call me back.

An hour later I just about jumped out of my skin when my phone rang. It was a nurse saying that my doctor would call me tonight, after he finished in clinic. That sounded terribly ominous, and I was shaking so much I felt like I could barely stand.

Finally, tonight, my doctor called.

Frustratingly, we are back in the vague land of “slight enhancements”. My doctor feels (and I agree) that it is too soon to make a call whether or not this drug is working for me, especially with such vague results, so I am staying on the drug and we are rescanning in 4 weeks. Back on the emotional rollercoaster. This is exhausting.

But we are going to California, dammit! A week to forget about all of this and just be together! Fun, family memories, and adventures await!

Meh.

I got the results from my every-8-week scans for the clinical trial, and the overall reaction is ... meh.

Things are not getting better, but they also are not getting significantly worse, at least not enough to kick me out of the trial. Which, in and of itself, is a good thing when dealing with metastatic cancer. "Not much worse" is good enough for a while.

So, I will try to string together another few months (hopefully more!) giving researchers more time, and trying to hang in there until some exciting new trials are back into action (I'm looking at you, TPX-0005!).

Crossing our fingers that we are not burying our heads in the sand and missing progression in our optimism.

-----

In other news, we had a wonderful trip to Minnesota visiting family and celebrating my parents' 50th wedding anniversary! The road trip there and back, the family party, meeting up with old friends, seeing friends get married, leisurely hours playing cards and working on puzzles, helping my mom with some decorating projects, playing with my baby nephew, and so many more things were absolutely perfect.

So many games!

Here's to more months, and more time where the biggest drama is on the chess board.

five.

So here we are. Five years. When I was diagnosed with metastatic lung cancer, the statistics said that my chances of living to see this day were less than 1%.

This is a sobering anniversary; I can’t help but think of all my friends who ran out of time. People who seemed to be managing treatment so well and then .... well, we know how fast the snake can turn. Why have I been so freakishly lucky in this horribly unlucky disease?

I took a stroll down memory lane to see how I wrote about this day over the past 5 years.

• Four.
• How Much Do You Want To Know About Your Cancer? (third anniversary)
• Cancer as Rebirth (second anniversary)
• That Time of Year (first anniversary)
• The Plural of Apocalypse (diagnosis)
• And when we found out it was metastatic and incurable: The Time is Now

A cancer diagnosis inevitably leads to talk of a “bucket list.” I thought about this quite a bit when first diagnosed, but there wasn’t a whole lot that I hadn’t already done. I had been fortunate enough to travel internationally, live in several different places, experience all sort of wonderful adventures.

As I thought about mortality and time and what I wished for in this life, I realized that all I really wanted boiled down to three things.

1. See my kids grow up
2. Help Jason build our dream business
3. Cure my cancer

I still have a long way to go on the first one, but I feel so fortunate to have gotten as many years as I have. When I was diagnosed, my hope was to live long enough to see our son start kindergarten. Now we are discussing middle school options. Unbelievable. So very grateful.

#2 on the bucket list is coming along well! Pointless has been up and running for almost 2 and a half years, adding on an additional space for the Pointless School of Improv after the first year. We still have many ideas of how we want the business to grow and things we would like to do with it, but it has been amazing being part of this process. When I stood on the stage for my curtain speech on opening night, I confessed that I didn’t actually think I would live to see the doors open. But I did!

The third item is humongous and audacious, but hey, dream big right? I have been amazingly fortunate to cross paths with two amazing women (yeah, I'm talking about you Lisa and Janet) who share my rare mutation, and who also made the bold decision that we needed to drive our cancer care and the research toward making our disease manageable instead of terminal. The three of us sowed the seeds of the ROS1ders, and in partnership with the Addario Lung Cancer Foundation and many more wonderful ROS1ders have developed the Global ROS1 Initiative.

These three goals are what have driven all of my decisions for the past 5 years. How’s that for singularity of focus! I suppose it would have been easier to say “I want to go to the Grand Canyon,” but I never did do things the easy way. Just ask my parents.

-----

It has been a lot, taking stock of these past 5 years. Trying to enumerate what I have been through, what my body has been through ....

• 2 bronchoscopies
• 6 cycles of a 3 chemo agents
• 50 months of crizotinib
• 3 sessions of SRS
• 20 injections for bone mets
• 1 clinical trial
• 3 PET scans
• 3 bone scans
• 10 EKGs
• 17 brain MRIs
• 21 CT scans
• 1,826 days (knowingly) living with lung cancer, and all the effects and side effects of cancer treatments and procedures.

But who’s counting.

-----

Five years is a significant milestone that deserved a significant gesture.

So I got a tattoo! Something borne with pain which left me forever changed. Quite fitting.

Our daughter wrote this on the family calendar.

It was my first tattoo so I didn’t know what to expect, but the artist was very patient with me. Jason, the kiddos and I designed the image to honor the 5 of us surviving these past 5 years, with each of us represented by our favorite color.

It didn’t hurt much, though I had a moment that morning where I thought to myself, “wait - why am I going to get poked by needles ON PURPOSE?”

I watched the tattoo artist do all the black outlining, then when he switched to colors he said he would start with the darkest one first. “That’s yours, Jason!” I said as I looked over at him.

Then all of a sudden, the past 5 years hit me, and tears ran down my face. I started thinking about all that Jason has had to deal with, always waiting for the next shoe to drop, always ready to take over when I feel unwell, always, always, always....

It had no idea that getting the tattoo would make me so emotional. As a friend said, “It is momentous for a reason.”

-----

We marked this anniversary with bowling, a tradition we started when I was first diagnosed, when I was too weak to actually bowl, but could sit and watch and be present with the family. I had been told to "make memories" for my children, so I did it in any way I could.

Strike dance!

Strike hug!

We had cake, because every special occasion deserves cake. There was only one image fitting such a momentous day.

My dear friend Meriah commissioned artist Jermaine Dickerson to create this family portrait for us, not long after I was diagnosed.

The 5 of us

We each ate our own head!

So here we are, five years. I never expected to see this milestone. And yet I cannot help but hope I will see more. I'm already dreaming about that next tattoo . . . .

Four.

Four years ago today I was diagnosed with lung cancer. We wouldn't find our for several days just how bad it was. This time four years ago I was still under the false impression that the cancer was contained in my left lung, that I would be facing chemo and the removal of my lung. That we would be aiming for a cure.

We wouldn't know for several days that it had spread to the other lung, to my spine, my hip, my shoulder blade, my ribs, and my liver. We didn't know yet that the cancer was incurable. We hadn't yet thought of the word "terminal."

The statistics for Stage IV lung cancer are sobering. According to the American Cancer Society, the 5 year survival rate for metastatic lung cancer is 1%. The Lung Cancer Association cites more optimistic figures at 4%.

We had a big, heartbreaking loss in the lung cancer community yesterday. The red headed unicorn, the force of nature, the woman who inspired so many of us, Kim Ringen died yesterday, just a few days short of her 4 year cancerversary. It's hard to celebrate mine when I know she and so many others will not.

So today I'm trying to turn the sadness into thankfulness. We spent the weekend putting in our backyard vegetable garden, and with each turn of the soil I thought about how lucky I am to be able to dig in the dirt, to plant and nurture new life. I try to accept that I need to pace myself, even though my physical limitations frustrate me (as Zander put it, "Mama, you take A LOT of breaks).

Kiddos hard at work

The Garden

I remind myself how much sicker I was four years ago at this time, when I would gasp for air after taking more than a few steps, when I was too weak to stand in the shower, when even a conversation would leave me short of breath.

I remember all this, I think of all the friends who I have lost, and I remember how very lucky I am to be here four years later.

A Day I Never Expected to See With Metastatic Cancer

This weekend I celebrated a day I never expected to see – my fortieth birthday! It has been almost three years since that awful day when I found out that I had lung cancer that had spread throughout my body. In those days, I was so very sick and weak that I couldn't imagine living for another six months, let alone entering my 40s.

I decided it was a milestone I needed to celebrate BIG, but I also wanted to give something back to the community that has supported me and quite literally kept me alive this far. I decided to have an improv show at the theatre/brewery that my husband and I co-founded, and to give all the funds to cancer research. It was an amazing night. I told the story of my cancer journey, and our incredibly talented cast of improvisers took those ideas and themes and turned them into hilarious scenes that had the audience – myself included – laughing until our sides ached.

But, as it seems to happen with every joyful occasion on my life now, part of me kept wondering if this would be the last birthday I would see. I have no delusions about the path I'm on, and I am acutely aware of how insanely lucky I have been so far. I have become intricately connected with the lung cancer community, a group of people who have kept my sane throughout this awful rollercoaster ride. Unfortunately, I have learned how quickly the tide can turn and sometimes the person you were sure would beat the odds doesn't.

It's a delicate balance, this stage 4 life.

On the day I turned 40…

…"scanxiety" crept around the edges of my mind. My three-month scans were due the day before my birthday, but I requested to have them pushed back a week so that I could enjoy my celebration with a (relatively) calm mind.

On the day I turned 40…

…a fellow stage 4 boldly embraced her future and got married. Despite the uncertainly, she took the brave step into her future and decided to live!

On the day I turned 40…

…my lung cancer community mourned as a fellow stage 4 took his last breath. Treatment after treatment failed him, and despite seeking out specialists and clinical trials, the cancer moved too fast.

Birthdays are a time for looking back and looking forward and taking stock of where you have been and where you hope to go. At times like these, it is hard not to think about the daunting five-year survival statistics for metastatic lung cancer. These numbers have recently doubled – sounds great, right? But they doubled from 1 percent to 2 percent. As I approach my third anniversary of living with this disease, I can't help but wonder if the clock is ticking.

I try to find the balance, focusing on all the joys I have in my life now, and daring to let my mind wander into the future. I sure hope to blow out candles that read "41."


Originally published at: http://www.curetoday.com/community/tori-tomalia/2016/03/a-day-i-never-expected-to-see

Cancer as Rebirth

Two. This month marks my second anniversary of living with stage 4 lung cancer. Two years ago at this time, lung cancer burst into my life, kicking and screaming, demanding all of our attention and making our family completely alter our lives to accommodate it.

Those first few weeks were a fog. Just make it through this day, this hour, this minute. As the months went on, we gradually grew accustomed to its presence and learned how to live with this new creature in our midst. I learned to take those tentative first steps — to get my legs under me again. A stumble, a trip, then finding the courage to pull myself back up and try again. Trying to find a voice, to speak this new reality. Find words to communicate and describe this new landscape. I learned to grow into this new identity, to develop my new sense of self.

Two years ago today I got that devastating phone call that confirmed it. No more hoping that my severely impaired breathing was due to an unusual strain of pneumonia or some bizarre infection. The biopsy confirmed it: lung cancer.

Two years ago today all I could focus on was getting oxygen into my body.

Today, I spent the day at the building we are transforming into our dream business, where I prepped the rewards packages for the people who donated to our fundraiser. Tonight I spent the evening at my son's school ice cream social, watching the kids run around the playground with their friends, negotiating with them how many ice creams they could get and enjoying the sun and breeze.

Two years ago I ate dinner lying on the couch, too weak to sit at the table with the family.

I guess you could say that the old me died on that fateful spring day in 2013 when I got the devastating news. The person who I was prior to that point is gone now. The person who could talk casually about growing to old age. The person who could commit to future events without a voice in the back of her head whispering, "if I'm still here then."

But it is not all bad. A new person has arisen from the ashes. A person who is not afraid to take chances, be bold or speak up. Over the past two years I have found a new voice. I have found my footing, taken my first steps and learned to walk again. Among other things, I have become a person who can rattle off the names of half a dozen tyrosine kinase inhibitors currently in clinical trials and a person who drools over news from ASCO. I'm someone who thinks frequently about end of life, who walks alongside sickness and who knows a shocking number of people in various stages of dying. I'm someone who no longer feels afraid of talking about these taboo subjects. And someone who understands the painful, beautiful brevity of our time here on Earth.

Two years living with metastatic lung cancer, and today I am a billion times healthier than I was when they (finally) figured out what was wrong. Two years and still kickin'. Who woulda thunk it?



Originally published at: http://www.curetoday.com/community/tori-tomalia/2015/05/cancer-as-rebirth

Kickstarting a Dream

What a ride this has been! This is the first time I have run a crowd funding campaign, and it has been a fascinating experience. My emotions have ranged from thinking this is exciting, to uncertain, to heartwarming, to what-in-the-world-were-we-thinking, to hopeful, to exhilarating.

There was the initial jump in responses, there was the dreaded "Day of No Pledges," there was all the great press we got, there was the exciting pledge match, there was the thrill of scrolling through my Facebook feed and seeing people playing the Pointless Challenge, and there was the amazing push at the end which got us not only to the goal but over the top!

I don't think I will ever forget that Friday night when we hit our goal which ensured we would get the money we raised. It was a gorgeous evening, and so our family decided that we would bust out the grill for the first time this season and enjoy an outdoor dinner. The pledges had been pouring in all day, and my friend Meriah kept texting me, telling me to get out the champagne, that the goal was in sight. I, being cautious, kept saying "maybe... maybe". Jason was grilling up the burgers and hot dogs, the kids were running around the yard. I kept getting alerts on my phone about another pledge coming in, and another one. We dished up dinner, dusted off the patio furniture and sat down to eat.

Then, we were at $49,990 and everything froze.

My phone dings with an alert that someone has increased his pledge by $11. "I couldn't take the stress!" he told me later.

We did it!!!!! Amazingly, with support from around the globe, we had reached our Kickstarter goal and unlocked the pledges.

US:      We did it!
KIDS:  Did what?
US:      We raised a bunch of money to help build the brewery & theatre!
KIDS:  Oh. Can I have another hot dog?

And so we celebrated, opened a bottle of wine, feasted on hot dogs and hamburgers, and marveled at the generosity of human beings.

Here are the numbers (because I love numbers):

• Duration of the campaign: 39 days
• Amount raised: $52,536
• 105% of goal reached
• 522 backers from across the US, Canada, Australia, Poland, Israel, UK, Germany, Russia, Sweden, and Japan.
• Average pledge amount: $100
• 3,306 people watched the video
• 57 people increased their pledges during the campaign
• 36 people donated after we reached the goal. I have even gotten messages from people saying that they missed the deadline, can they still give (the answer is yes! Email me to talk more: tori AT pointlessbrew DOT com)

I find the Kickstarter philosophy quite fascinating. It is all based on their motto that all-or-nothing funding works. They publish all of their statistics, and their numbers back up this method:

• Of the campaigns that made it past 60% of their funding goal, 98.6% made it to their full goal and were funded. 
• Of the campaigns that made it past 80% of their goal, 99.3% made their full goal and were funded.

In other words, if you can reach a critical mass of people caring about this project, you are highly likely to get it to launch. I had all these numbers in my head throughout the campaign, but they only helped squelch the fear so much; there was still that chance that we might be in that tiny percent that fail!

So, what now? Well, Jason is busy cooking up all sorts of new brew concoctions, planning for auditions, working on permits and licensure, and I am busy dreaming and scheming about the family series which we are calling "Little Peeps." Much work, much fun, and all of it made possible by the support of our community around the world. "Thank you" doesn't begin to scratch the surface.

~ ~ ~ ~ ~

In other news, the Healthline list of Best Lung Cancer Blogs of 2015 has recently come out and I am happy to say that I made the list, along with several other awesome bloggers, though I think the judges missed out on quite a few great ones. Most of all, I am happy to still be around, living, enjoying life, and still able to write and share this journey with others. Dare I hope for 2016?

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?

 “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 40^th 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

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

Live in the Moment: A Lesson From Cancer. And Preschoolers.

Having stage 4, incurable, metastatic, terminal lung cancer (or "eventually terminal" as my cancer buddy says) has made me acutely aware of death in a way I never expected to be at age 38.

I walk in the land of the living with the oppressive knowledge of how very close we all are to the land of the dead.

I know that right now my cancer is under control, but one day this roller coaster will dip down again. Will it come back up or will it be the final plunge?

~~~

People ask me how I cope, knowing how very uncertain my future is. Learning to cope has been a gradual, ongoing process. First was the shock, a frozen inability to process this new reality. Then there was the grief, the acknowledgement of my lost future, all the things I had just assumed that I would get to do and see. The plans that I had laid crumbled beneath my feet. But I realized that I couldn't stay in that mental space. I felt like I was wasting the time I had left here by focusing on my lost path.

So I stopped looking down that road. I started doing what all the self-help gurus tell you. I grabbed onto the old cliché and focused on "living in the moment." It is liberating and bizarre. And I get strange jolts when I remember that most people don't live like this.


I'll look back on this when I'm 80 and I'll laugh about it!

This will make a great story to tell my grandkids!


I avoid thinking about my own future in any concrete terms. I can think in a general sense about the future of the world, how things might be one day. But to think about my family five years from now sends a pang through my heart.

In five years, our little boy will be 11 and in middle school. Will he still have his heart-achingly gentle outlook on the world? Will he still be the kind soul who once explained to me, the reason Oscar the Grouch is so unhappy is because he lives in a garbage can. How can he sleep? The poor creature is miserable, no wonder he is rude.

In five years the twin girls will be 8. There will be no baby talk left in them. The terrifying sounding "pinado" will become a simple "piano," and the aptly named "hungerburgers" will be plain old "hamburgers."

Those 3-year-olds have the concept of living in the moment down to a marvelous, frustrating science. When prancing around the house like Elsa and Anna, nothing else in the world matters.


"It's time to get dressed and go to preschool."

"But we're dancing!!!"


Really, what matters more than the joy of spinning around in fairy wings and a cape? Being around small children forces you to stay in the present moment. The runny noses and sore tummies are so grounded in reality and immediacy that there is little room left for worry about futures that may or may not be.

~~~

Isn't part of growing up focusing on the future? Be an adult. Plan for tomorrow. Think ahead. Prepare for the rainy day. How are you supposed to do that when you KNOW that your future holds a typhoon? If you focus on the storm, your today will be washed away. Who knows how long any one of us has? In my case, I most likely know what is going to be the cause of my death. Does that make it different?

So I avoid thinking about the future. At least most of the time.

It's a tricky balance. I am a mom, so a big part of my job is preparing my kids for the future. How do I prepare them for a future that may not include me?



Originally posted at: www.curetoday.com/community/tori-tomalia/2014/12/live-in-the-moment-a-lesson-from-cancer-and-preschoolers

Happily Ever After

This past weekend I had the pleasure of seeing my baby brother get married. When he and his then-fiancée announced their engagement last August, I secretly feared that I wouldn't be around to see the big day. Thankfully, I made it!

All the wedding stuff got me reflecting on marriage, and being a know-it-all big sister I can't help but give a little unsolicited marriage advice - not that the newlyweds will read this, since they are off honeymooning!

Lounging out before the ceremony

People often sagely say that "marriage takes work" and "marriage is hard." I think they are emphasizing the wrong thing. It's not marriage that is hard; life is hard. 

In the words of my favorite superhero, "The hardest thing in this world is to live in it."

It is hard to face all the random twists and turns that life throws at you. It is hard to be thoughtful and kind. It is hard to remember to say "thank you" for all the little things. It's hard not to take people for granted. It's hard to remember to find the joy in the small moments of life. It is hard to feel all the emotions that come with being human.

At dinner, Jason was talking about an improv rule that I think is also a great reminder for life:

"The scene in your head is rarely the scene you are in."

All the small affronts that become looming problems in our minds can often obscure the life that is happening right in front of our noses. It is easy to read too much into an offhand remark, to assign motivation to a tone of voice. It is easy to read weary body language as frustrated, and a comment born of exhaustion as a personal attack. I have often found that when I get irritated with Jason, it actually has nothing to do with the glass left in the sink, but everything to do with how tired I am.

Being a good person is no small feat. Sometimes life is really hard.

So it only follows that marriage has all the same challenges as life. At the same time, it carries with it joy and partnership, love and friendship. For those lucky enough to find it, marriage becomes another one of the blissful challenges you face during your journey on this planet.

Congratulations, Phillip and Liz! May you have many, many happy years together!

Changing my name to NED

As I lay in bed this morning, my semi-conscious mind tried to decide if I was ready to face today, a day which entailed finding out if my cancer was, in fact, starting to invade my kidneys as was suspected from my last CT scan. As usual, Jason was already up and taking care of the kids because, well, because he is awesome and because my sleep needs are now much greater than they used to be. I heard him bound up the stairs and say into the phone, "Let me check if she is awake." I was, and I was greeted by the cheery voice of my wonderful PA. "It's good news!" Not only are my kidneys clear, but all the bits of tumor that are left in my lung are dead. There is no evidence of cancer living in my body. I have achieved the holy grail of stage IV cancer, NED (no evidence of disease).

!!!!!!!!!!!!!!!!!!!!!!!!

And it is Jason's birthday! He is quite the good luck charm. One year ago today I got the results of my first scan after starting chemo, the scan which would tell us whether or not my cancer would respond to treatment. Needless to say, a very important and very terrifying moment. 

Two years in a row of great scan results on your birthday, Jason! I got to double celebrate with this awesome crew today.

If you are not an inhabitant of Cancerville, you may be wondering why my CT scan from last week would show something different than the PET from yesterday. It helps me to think of the CT scan as a high-definition camera that takes black-and-white photographs of the inside of the body. It can detect every lump and bump, but it can only show what it looks like, and can't tell the difference between a live or dead tumor, scar tissue, cysts, etc. A PET scan involves injecting the patient with a radioactive sugar substance. It goes through the bloodstream for about an hour and every part of the body that eats up sugar will glow when the patient is in the scan machine. Cancer gobbles up sugar, as do muscles, which is why you are not supposed to engage in much physical activity for a day or two prior to a PET scan.

A fellow cancer patient told me that he was advised not to text while in the prep area for his PET scan. I thought about this briefly while the stuff was going through my veins, but I though just a little bit of time on my phone wouldn't be a big deal. Yes, there was a "no phones" sign, but I thought that probably just referred to talking on your phone. And technically I only replied to one text, the rest of the time I was just scrolling and reading. Fast forward to the end of my scan, when the technician slid me out of the scanner machine and said, "Were you using your phone in the prep?" Uh, yes. "Are you left-handed or right-handed?" Left. With a curt nod she turned and walked out of the room. A few minutes later she returned and said, "I just talked with the doctor. The muscles in your left forearm are lighting up, but he said that is just from scrolling on your phone. You REALLY aren't supposed to use your phone in there!" Busted.

This was my view as I drove off to my PET scan yesterday. 

Such a lovely bunch of well-wishers!

For clarification, these wonderful results don't really change anything. I still have to take my amazing targeted med twice a day (THANK YOU XALKORI!), and I still have to deal with the less-than-awesome side effects of the drug, and I still have to go back for scans every three months, and I still know that at some point the cancer will likely develop a resistance to the meds. Unlike many other cancers, such as breast and prostate, there are no markers that you can track from a blood test. I can't see if my numbers are going up or down as an indication of the state of my cancer. With lung cancer, the only reliable way of knowing (currently) is to wait until it is big enough to grow into a tumor visible on a scan. So, it is quite possible (maybe even probable) that there is some cancer left if there. But, for now, it is just fantastic to know that there is no visible cancer in my body.

And for the punch-in-the-gut portion of this post:

I asked Zander what he wished for when he blew out his birthday candles. 

"I wished that you and Daddy would never be dead." 

A strange kind of boogeyman enters your world when you become a cancer family. I've learned that the thing of nightmares can come from within my own body. We all face the same impermanence and chaos of the world, but a journey like this forces you to come face-to-face with mortality in a way that many others can ignore. I miss that ignorance, and it makes my heart ache to realize that my children will grow up never having known it.

I'm NED for now - and hopefully for a long, long time - but I'm forever changed by this awareness. It's not necessarily a bad thing, but it certainly makes me view this brief blink of time we get on this earth in a whole new way.

That Time of Year

I love summer in Ann Arbor. The weather finally turns warm, I plan the garden, festival season kicks off, and all my favorite annual events roll around again.

This time of year is now also a minefield of poignant memories.

I remember counting down the days last year until the end of my semester, willing myself to make it through that last final, that last presentation, and that last tour performance. I was not overwhelmed by the workload - it was a lot, but I thrived in that environment - for some reason, though, I was totally and utterly exhausted. I had been fighting off recurring chest colds for months, and I just couldn't get ahead of them. I remember giving my research project presentation and having to stop and catch my breath. Just standing and talking had me winded. I slept for a week after exams, and somehow it didn't feel any better....

Today we drove past Picnic Pops, an annual outdoor festival of local high school and junior high bands, and I said to Jason, "Oh! We went to that last year!" And then the memories flooded back. Getting out of breath walking around, struggling to carry the girls, ordering a big cup of coffee despite the heat because my "asthma" was terrible and I though a big jolt of caffeine might help.

I remember talking to my mom on her birthday and discussing how my doctor might try a course of steroids to try to get this asthma under control.

The awesome neighborhood bash Burgers on Bellwood is coming up soon, and I remember that Jason took the kids by himself last year, because by then I had been diagnosed and I was so short of breath that doing much beyond sitting on the couch was a huge effort. (The lovely hosts sent him home with a plate of food for me.) We both thought about but didn't talk about how he better get used to taking the little ones everywhere by himself.

I remember missing Zander's preschool end-of-year assembly because I was having a brain scan.

And I remember leaving the garden completely untouched, to be covered by the fall leaves, then the winter snow. When it started to melt this year, we stood there staring at it, an image frozen in time that was such an accurate representation of how we felt frozen in those early days. We were in a holding pattern, in crisis mode, just trying to make it through the day, make it through the night without having to go back to the ER.

And now thankfully, amazingly, we are dreaming about the future. Still cautiously and with contingency plans, but dreaming nonetheless.

Every day I breathe, everyday I think, I am alive! And that is something wonderful.

What a Joy

It's my birthday!!! I am very excited to say that I turned 38 today. I wasn't sure if I would see this day, but it is here, and it is great.

I've never been one to be ashamed of growing older, but especially now I see each day as a success. I'm still here! I'm still enjoying happy times with my family, soaking up the tiny bit of sun that is starting to warm up our seemingly-never-ending winter, and even dreaming about planting a garden.

Tomorrow is not promised to anyone. Don't dread growing old; it is a privilege that not everyone gets to enjoy.

What a joy it would be to grow old

To watch my hair turn gray

To see my face crease and wrinkle

With the fingerprint of time.

What a privilege it would be 

To trade my near-sighted specs for those with a line or two

To shout, "eh, sonny?"

And debate the virtues of denture creams.

How wondrous to watch my skin sag

To be called "Over the Hill"

Or "past my prime"

Or Granny.

What a joy it would be to grow old.

May we all celebrate many more days and years on this earth.

The Meaning of the Median

Eight months ago today I was lying on the couch eating Trader Joe's fish sticks. Those days, I was so short of breath that sitting at the dinner table and eating was a lot of effort, so I took most of my meals on the couch. The phone rang, and I got the terrible news: the biopsy confirmed that I had cancer.

Eight months.

I am officially at the median survival time predicted by the (most likely outdated) statistics. 

What better day than today to dust off Stephen Jay Gould's great essay, "The Median Isn't the Message," writing that is often circulated among cancer patients, with good reason. He does a great job of explaining why he felt confident that he would outlive his cancer's median survival of eight months (and he did). He reminds himself, and us, that the median tells us 50% of the people with this disease will live longer than that point. The right tail of this graph can stretch out for quite a ways, and based on reports from several lung cancer patients who have lived with this disease for years, it does.

I hope to keep pushing further and further into the right side of the graph.

I have a scan on Friday and I have come down with a nasty case of PSS: Pre-Scan Syndrome. It mimics all the emotional symptoms of PMS, with irritability, heightened emotions, and general crabbiness. The logical side of me always grapples with this weird fear because nothing is actually different before and after the scan. The event itself doesn't change anything, only my knowledge changes. And yet, it still freaks me out.

I will get the results on Tuesday. Fingers and toes crossed for a good report.

100th Post! or Why Do I Blog?

This is my 100th post to this blog! Who would have ever guessed, when I wrote that first entry of my travelogue, that I would end up here.

Why do I write this blog?

My motivation has changed radically with each new chapter. In 2005, a free-spirited young woman set off traveling around the globe and used this space to document her adventures. Upon returning to the United States, she met her perfect match and got married in an idyllic beach wedding. A few years later, the two welcomed their first child into the world. This new mom wanted to capture each amazing moment of her little boy's development and share it with friends and family. Since parenting was such a joy, the couple decided to have another child, and were pleasantly shocked to discover that this new baby was, in fact, twins. The tale took a turn as the pregnancy met with complications that resulted in a month of hospital bed rest followed by a premature delivery of the beautiful baby girls. After a harrowing stay at the NICU, the family was finally reunited under one roof, and the adventures of parenting 3 under 3 began.

And now, as you know, lung cancer.

So, once again, my motivation for writing has changed.

~~~~~

The first few cancer posts were a way to let friends and family know what was going on, and to avoid having to explain details over and over. While this remains a major focus, I now find more reasons to write. For me, reading blogs by people going down this strange path has been vitally important; I hope that I might provide that comfort for others.

~~~~~

To my pleasant surprise, several of my blog posts have resonated with people on the other side of cancer. A friend who is an oncologist working with breast cancer patients asked if she could share my post, "An Exciting Time to Have Cancer" with her patients, as she felt I explained things in a concise, accurate, yet personal way that would mean a lot to them.

~~~~~

My friend, Agi, who is an instructor in the biological engineering department at MIT, shared a few of my blog posts with her lab class to help them understand the human side of what they are studying. She also wanted to give them "the reality check of how insurance companies and pharma businesses intersect with the science."

"[S]cientific discoveries don't translate into swift clinical action," she said, "it takes an educated, persistent, brave, and articulate patient -- especially with very recent findings."

One of her students wrote to me, expressing how much reading my blog has helped to motivate him and make him realize "that some fairly meaningless name I'm studying, like ROS1, can be so life-changing for another person."

He eloquently expressed to me that he is one of the students, working and studying

"late night after late night, training to become the professors, scientists, engineers, and doctors that will one day dream, develop, test and prescribe the weapons that you go to war with every day. All of these professionals push past obstacles day to day in order to sharpen your swords and strengthen your shields, so that when you go to war, you will win."

It inspires me to hear that kind of passion from the upcoming generation of scientists. 

~~~~~

I was honored to have this blog make Healthline's list of the Best Lung Cancer Blogs of 2013. I hope this will help people who are dealing with this disease to find the blog.

~~~~~

In case you may have missed it, I was interviewed for a story in the Ann Arbor News. Journalist Katrease Stafford wrote a great article that covers events in my life both pre- and post-cancer.

~~~~~

And while I am very happy to be making these new connections, there is one other very important reasons why I write.

I write because there are conversations I may never get to have with my kids. One day they may read my words and I hope that will give them comfort. It is a way for them to know me, to understand how I view the world, and what I find important about how we travel through life. I want them to know how much they motivate me to be a stronger person. And I want them to know and understand that I love them more that I could ever explain, and I will love them for all eternity.

Happy New Year to all! May 2014 be filled with laughter, love, and life!

Cancerversary

23 years ago today, at age 14, I was diagnosed with osteogenic sarcoma of the right humerus.

It is strange that now I have to refer to that as "the first time I had cancer."

I recall driving to the biopsy early that October morning, when the first fingers of Minnesota winter were really starting to grip the state, covering everything with frost and making the air harsh and brisk. I looked out the window and thought to myself, quite dramatically, "thus begins the winter of my life."

The doctors very strongly suspected that the biopsy would come back positive for cancer, and told me they would be able to tell by looking at the specimen for just a moment under a microscope, so the plan was to keep me under anesthetic and put in my port once they confirmed it was positive. I remember waking up after surgery and feeling for my new port. It was there, so I knew my answer. "Here we go." I fell back into my groggy slumber.

What followed were 11 of the hardest months of my life. I seemed to get every rare complication from the chemo drugs, so much so that at the end of my treatment, one of my oncologists remarked, "When I told you all of the possible side effects, that wasn't meant to be a challenge!" My chemo was all inpatient, with five days in a row of infusion. After every cycle, without fail, my counts would drop dramatically and I would come down with an infection which would keep my in the hospital until it was time for the next chemo cycle. I was so violently ill from the chemo that I was fed via IV for months, and still lost 30 pounds. I spent virtually a whole year in the hospital, a building that was less than two blocks from my home.

I remember arguing passionately on Christmas eve day, begging them to let me go home so that I could wake up in my own bed on Christmas morning. First, they said, I had to prove I could eat and drink. I set to that task with great resolve, and later that afternoon proudly told them that I had kept down half a glass of water and one and a half saltines. At that time, it was a huge accomplishment, and somehow they agreed to let me go home. I spent a lovely 24 hours with my family, opening presents, and having a fairly normal Christmas before checking back into the hospital that night.

Not surprisingly, my second dance with cancer has led me to reflect on that time a lot, and I keep wondering if there are others like me out there who won the battle the first time, then got reenlisted into a whole new fight. At my follow up appointments when I had finished treatment, I used to ask about the other young cancer patients I knew, until one day I was told that two of them had their cancer recur, and one had passed away. I stopped asking after that.

I have only kept in Christmas-card-contact with one of my old cancer buddies, and while I would love to talk to her, I think it would be kind of cruel to call her up and say, "Hey, remember when we went through hell together, then got cured and went on with our lives? Well, it can come back in a whole new form!"

In some ways, I am thankful that I have my first experience to think back on, because I know just how much I can handle (a lot). So far, at least, this hasn't been nearly as terrible as that was. Side effect management has improved by leaps and bounds, and I am currently on a fairly tolerable chemo triplet. I know that things will get a lot harder. But I am also older now and have a lot more life experience. Most importantly, thought, I have three little ones who keep me very grounded in the real world of day-to-day life. They are three small people for whom I would do anything.