Tuesday, February 24, 2015

Breaking Point

My port had stopped working, so they needed to start an I.V. The first nurse had blown two veins and had called in a replacement who was on her way to blowing a third.

In the grand scheme of things, a few needle pokes were nothing. I had been through worse before, and there would be much harder days ahead. But in that moment, it was too much. In that moment, the months of treatment, the endless hospitalization, the constant nausea, and the helplessness were completely overwhelming.  I burst out crying. I can't do this anymore.

My sister, who had been sitting in the chair next to my hospital bed, stood up and walked over to me. She cracked a smile. "Remember that day when we were little kids and we were swimming at the lake, playing Jaws?" I stopped crying and looked at her, confused. She went on to recount in exquisite detail a day years earlier when we had been swimming and had gotten our legs stuck in the weeds and muck at the bottom of the lake and I had thought that a shark was attacking us. She ran around my hospital room, with her fin/elbow on her back, singing the theme from Jaws. Da-dum … da-dum… da-dum…

She had always had a knack for timing, and could change the energy of a room in an instant with her incredible ability to spin a tale. Somewhere between her imitating my 5-year-old squeals of fear and acting out our parents' response, I started laughing so hard the nurse gently said, "Could you please stop shaking the bed?" I toned it down to a hearty chuckle, and before I knew what had happened, the I.V. was in and the fluids were flowing.

Twenty-some years later, my sister is a midwife and every time I think of this story, I know how lucky those women are to have her by their side. In those moments when they feel like they just can't keep going, I am certain that she finds exactly the right words that they need to hear.

People ask me, "How do you cope?" I don't really know the answer, other than I just keep putting one foot in front of the other. But of course, it is not all my doing. I have had times when everything felt like too much and I can't imagine how I could go on. I have been incredibly fortunate to have people in my life, like my sister, who have helped pick up my foot when the next step seemed impossible.

If you read my last post, "10 Tips for Coping with Scanxiety," then you may recall that I just had my every-three-month scans.

And the results were great!

My amazing targeted med is still going strong after 16 months. There was one little hiccup, in that they found two small blood clots. To treat those, I will be giving myself twice daily shots of a blood thinner for a month, then once daily ad inifinitum. All these needle pokes made me think about the above "Jaws" story from my childhood cancer treatment, and how the cumulative stress of illness can make something as simple as a an I.V. push a person over the edge. Right now I'm feeling healthy (relatively speaking), so I'm fine with some extra needle pokes. But it is easy to see how quickly a lot of little nothings can add up to too much.

Everyone has a breaking point. If we are lucky, we have someone who can guide us through it and help put the pieces back together again.

Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/02/breaking-point

Saturday, February 21, 2015

Scan Results=Yay! Blood Clot=Boo!

For those of you who follow my scan/doctor appointment schedule (which is amazingly sweet, by the way) you would be passing the time this weekend patiently waiting for scan results on Tuesday. And you would have been almost as shocked as I was Friday afternoon when my phone rang, and the caller ID showed that it was the cancer center. By the time I answered the phone and heard my oncologist's voice, I was trembling. Why in the world would she be calling me when we had planned to discuss the results at my appointment on Tuesday?

She quickly said, "Don't worry, your scans are fine. But we found a small blood clot and would like to be safe and start you on heparin injections. I'm so sorry you will have to give yourself shots."

Me: "But my scans are fine?!? Okay, when do I start?"

I don't love the idea of twice-daily shots, but I like it a lot better than cancer progression!

I went in to the clinic Friday afternoon and learned how to do the Lovenox shots. So far, they are no big deal, and I don't yet have the lovely bruises on my stomach that I was told to expect. The nurse commented on how calm I was giving myself the shot, and that most people's hands shake the first time they do it. It's all perspective; when the doctor called I was sure I was getting terrible news. In comparison, these shots are no big deal. Funny what you can get used to!

So, I continue on my amazing targeted med Xalkori. 16 months and counting!

Thursday, February 12, 2015

A Pointless Story

I have been so busy writing stuff for CURE that I haven't been posting new content for this lovely bloggety-blog. And there is a huge piece of the puzzle that I have been leaving out.

I briefly mentioned this in a previous post, but Jason and I are knee-deep in launching our dream business. I guess I keep forgetting to write about it because we are so busy working on it that I don't have a lot of brain space left to reflect!

So, on with the story....

Ever since Jason and I have known each other (seriously, we talked about this on one of our first dates), we have planned to one day open a theatre together. We knew we wanted to create a space where people could come together and have fun, laugh, be creative, and just enjoy. However, since we have both worked in theatre for so long, we are well aware of how difficult it is to have a financially viable theatre. We looked at models of theatres that were successful, and they all had other sources of funding in addition to ticket sales, such as a strong education branch, a corporate program, and so on.

Then, about 7 years ago, Jason got a homebrewing kit for Christmas. And the man went crazy. He was totally hooked, and fell in love with every aspect of it. (And his beers are really good!) That's when we realized that combining improv theatre with craft beer was the perfect blend. Improv theatre is all about working within an existing structure to create something new; craft beer starts with existing styles and innovates with new ingredients and methods. They go together like rainbows and unicorns!

So, we had an idea we loved, but we also had three small kids and I was busy pursuing an MFA with the goal of becoming a professor. We put the business on the back burner and planned to return to it once my career was up and running.

And then, as you know, cancer.

My diagnosis flipped our whole world upside down, and "long-term goals" seemed pointless. Jason and I talked a lot about what we wanted to do with this time, and what we wanted for our family. We realized that if there was ever a time to pursue our dream of building something together, the time was NOW.

But how to make this happen? And what would we call it? Well, there is a story behind that too....

It was back during chemo and I was having a pretty horrible day. I felt rotten, run down, beaten up, and just exhausted. I looked at Jason with tears in my eyes and said, 

"What am I fighting so hard for? What if I go through all this, and it still just ends up awful? What's the point? Everything just feels so pointless."

And, being the wonderful, intuitive person that he is, he responded perfectly.

"Okay, maybe it all is pointless. Maybe everything we do is pointless.... So let's do this. Let's open a pointless brewery and theatre, and make our pointless dreams come true."

He got me to laugh through my tears. And then we looked at each other and knew that we had to do it. And we had the name. Pointless Brewery & Theatre.

It's the perfect name. How often do we waste our days doing what we are supposed to do, looking the way we are supposed to look, saying what we are supposed to say. You get up, rush to work, drink coffee to stay awake, work hard to get ahead, stress over deadlines, all for what? What is the point of that?

If you knew your time were limited, wouldn’t you spend it doing things you love, and spending time with the important people in your life? When it comes down to it, all that matters is the people you get to meet, spending time with the ones you love, and bringing joy to the world. Everything else is pointless. 


So, here we are now, building our dream! With the help of a few wonderful investors, we have leased a building, hired an architect, drawn up legal papers, and started making this dream come true. We will be launching a Kickstarter campaign in a few weeks to help raise the rest of the funding, and we aim to open by summer. I keep bouncing back and forth between being incredibly excited and absolutely terrified, which, as my dear friend Meriah said, is exactly how you should feel with a great creative endeavor. 

There will be more updates along the way as things roll out. Thanks for all your support throughout the ups and downs of my treatments. I certainly hope to be around helping Jason run this business for a long, long time. And if not, then I want it to live on and be something that he and our kids have to hold on to, and a place where people can come together with the people they love and find the joy in life.
"Grab a beer, have a laugh. It's all pointless ... that's the point."

Edited 3/23/15: Here's the link to the Kickstarter. Click on the logo, watch the video, and give what you can!

Tuesday, February 10, 2015

A Personal Take on Personalized Medicine

There has been a lot of talk lately about the personalized medicine revolution and President Obama's initiative to fund precision medicine. We hear about genetic sequencing and analyzing DNA, but what does all of this mean to a cancer patient?

Sit back while I tell you a little story….

In May of 2013 I was diagnosed with stage 4 non-small cell lung cancer at the age of 37. No idea why. Since it had already spread from my lung throughout my body, surgery was not an option. Cue the devastation, the panic, the shock.

The plan of action was chemotherapy, and while the side effects were far from fun, I was relieved that at least it was working, and my giant tumor (seriously, it wrapped all around my left lung) was shrinking. I could breathe a little easier . . . literally. But a body can only tolerate harsh chemo for so long before the side effects become too damaging to the other organs. So, what do to next? The cancer was smaller, but not gone, and we needed another treatment to keep the cancer from taking over my body.

It was then that we sent a piece of my tumor to be tested for a rare genetic mutation, called ROS1. On Halloween day, I opened my email and saw a note from my oncologist.

Good news, you tested positive for ROS1.

Tears streamed down my face as I read this. "Good news" was quite an understatement.

Now, you may be wondering why I was HAPPY to find out that I had a mutation. Isn't that something out of a horror film? Doesn't that mean my kids will inherit this?

Actually, no. A tumor has its own DNA that is different from that of the person who has cancer. I like to think of it as a parasite living in the host's body. There are some mutations that are passed through generations, but many tumors arise out of random mistakes that happen in regular, everyday cell division.

My cancer is a nasty patch of weeds that has invaded my carefully tended garden.

This pest starts in one spot, and if you don't cut it out of there quickly, it spreads to other places. If it goes unchecked, it will crowd out and suffocate all the flowers and veggies.

If you can't cut it all out (with wide surgical margins), you can try dousing it with industrial strength Weed Killer. This stuff is powerful and often does a great job on the weeds, but as my dad learned after spraying it liberally all over the yard, it does a lot of collateral damage on the others things that you want growing there. We had a polka dotted lawn all summer. (Hi Dad!)

Traditionally, oncologists have used Broccoli Weed Killer on Weeds-of-the-Broccoli, Tomato Weed Killer on Weeds-of-the-Tomatoes, and so on. In recent years, however, scientists have started to take very detailed analyses of these various strains of weeds, and have sometimes been able to find what is driving their growth. The fascinating thing is that at times, Weeds-of-the-Cauliflower turn out to be caused by the same problem as Weeds-of-the-Green-Beans.

With this newfound knowledge, these scientists are in the process of developing a whole new method for eliminating this scourge on your garden. Rather than using Weed Killer, which causes some damage to all of the other plants, they have found that sometimes they can stop these weeds in their tracks by targeting their drive to grow. These targeted medicines whisper to the weeds, "You don't want to grow anymore. Retreat." The rest of the garden goes on blooming happily in the sun while the weeds shrink back.

For me, my twice daily Xalkori has been playing this Jedi mind trick on my cancer for over a year. It is almost certain, however, that one day my cancer will learn to ignore it. At that point, we will take another biopsy to see if we can figure out why my cancer is no longer susceptible to this super drug. At that point, I will try another targeted medicine which I hope speaks the same language as the weeds in my garden.

For me, precision medicine is highly personal, and I am counting on it to extend my life for months and years to come.

Originally posted at: www.curetoday.com/community/tori-tomalia/2015/02/a-personal-take-on-personalized-medicine

Monday, February 02, 2015

When Cancer Gets Political

When you get a cancer diagnosis, your whole world flips upside down. Your focus shifts to treatments, side effects, scans and statistics. Sometimes, however, politics creep in.

The Food and Drug Administration has just announced that it plans to begin a new level of oversight for laboratory developed tests (LDTs). I, and many others with cancer, think this is a terrible idea.

But wait, you say, isn't FDA oversight a good thing? We all want to stay safe!

Absolutely! I want to know that I am safe, and oversight is necessary and beneficial!

However, there already is oversight. These laboratories currently undergo a certification process by the Centers for Medicare and Medicaid services, as well as other accreditation agencies. This new FDA regulation adds an additional, time-consuming hoop that will slow down testing of things like cancer mutations.

Those of us with metastatic cancer don't have years to wait for FDA approval of these genetic tests.

I have a rare mutation that drives my cancer's growth, and I am currently living well on a daily pill developed to target that mutation. When my lung cancer finds a way around this pill - which it inevitably will - I will be counting on these laboratories to test that cancer growth and find a new treatment for me. Cancer moves fast; we need to move faster.

Our understanding of cancer is developing at an incredible rate, and laboratories need the freedom to react quickly, developing and tweaking these tests without having their hands tied by slow, unnecessary extra oversights.

Fellow stage 4 lung cancer patient Janet Freeman-Daily wrote eloquently about this proposed legislation: "Of course, we all want LDTs to be as validated, accurate and clinically relevant as possible. However, we also want the laboratories where these clinical testing services are performed to be able to exercise the flexibility, innovation and medical judgment necessary for good outcomes in thousands of cancer patients.  This isn’t possible with the proposed FDA regulations."

Have you had genetic testing? Has you tumor been tested for mutations? This new legislation could stand in the way of that happening for you or others in the future.

If you have cancer, this impacts you.

If a family member has cancer, this is important.

Please take a moment to sign the petition, and encourage those who care about you to do the same.

(Still not sure? At least click the link below and read more about the reasoning behind this petition. It could change the course of your life.)

Tell the FDA to withdraw its proposed regulations for laboratory developed tests (LDTs). These regulations could limit patient access to life-saving tests and therapies.

The link: http://chn.ge/1uN2e2Z

Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/02/when-cancer-gets-political