Tuesday, May 29, 2018

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.

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.

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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.

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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.”

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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 . . . .

6 comments:

Corinne said...

So wonderful. Such courage and leadership. The tattoo is beautiful, as are your goals. I love your family portrait. Thanks for sharing your life with us in this way Tori.

Corinne

Lysa Buonanno said...

Congrats to you and your family. I love the tattoo. I love the cake. You have definitely made some great memories.

Anna Louise said...

Thank you for sharing this post and everything, Tori. Every time I read your blog I feel, selfishly, like I have received a rare and wonderful gift. And your ending photo and caption made me cry out with laughter and spit out my peas. So you!

TeacherPatti said...

Love this! You are super brave and strong--I am a total wuss who can't handle anything. You are my freaking hero! Love you!

Kimberly said...

Congratulations. I was just diagnosed with metastatic lung cancer and I am inspired and encouraged by your journey and optimism.

tushar soni said...
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