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

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!

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!

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

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

Don't Just Put On a Happy Face

WANTED: Someone who will let me speak my mind about this terrible disease, without having to be brave or positive or sun-shiny. Someone who will let me blow off steam and rant, someone who will let me feel negative and speak my fears about what lies ahead.

 
DESPERATELY SEEKING: Someone who will let me say that I am scared about what might be. That this disease freaks the crap out of me. Someone who will let me not be tough for a few minutes, but break down and cry about my anxieties.

I may get some static for this post, but I think that there is too much pressure on cancer patients to stay upbeat and cheerful all the time, dancing through treatments and smiling during scans. "You can beat cancer with a positive attitude!" Bah, if only that were true, I wouldn't have lost so many friends to cancer. On the contrary, it is perfectly natural – even healthy – to allow yourself to imagine various possibilities of what could be. If you have ever watched children play, you would notice that they act out "scary" scenarios as a way of understanding the world. Virginia Koste tells a powerful story in her book Dramatic Play in Childhood: Rehearsal for Life, about two children pretending to drown in a swimming pool. Their mother was alarmed at first, wondering why they would play at something so terrifying. She came to realize that by acting this out, they were diffusing their fear, and working through what they would do in that situation.


Few adults play-act these kind of scenarios as expressively as children, but we still run through them in our minds. How many times have you mentally rehearsed a difficult conversation before having it? How often have you played out "what if" scenarios in your mind? We instinctively know that these rehearsals help us feel ready to deal with challenging situations.


I understand the impetus from well-meaning friends who interrupt with "don’t say that, just stay positive!" when you talk about fears of what may come to pass in your cancer treatment, but they don't seem to understand that speaking about these anxieties is a means of release. The patient ends up feeling like she has to act happy and fine all the time, and stifles the desperate need to talk through all of this. Unfortunately, oftentimes caregivers feel the same responsibility to put on a happy face around their loved one with cancer, lest they bring him down or pierce the bubble of positivity. It ends up becoming a farce-like scenario you might read in a "Missed Connections" ad, where both people are looking for the same thing and don't realize that it is right in front of them.


As I mentioned in "Dedicated to the Caregivers" I have a phenomenal caregiver for a husband. And while he is often the one who brings me up when I'm feeling blue, I cherish the conversations we have where we let each other know how f---ing terrifying this is. In fact, one of my favorite memories happened a few months after my diagnosis, when it had finally all sunk in. By this time, we had cried rivers of tears and we were starting to accept our new cancer landscape, coming to grips with how totally bizarre and surreal our lives were now. We were talking with a friend about my diagnosis, and the friend said,

"But they caught it early right?"

"…No, no they didn't."

"But they can treat it and you'll be okay, right?"

"…No, no it's actually pretty bad."

And then my husband and I burst out laughing. Really, you can only cry so much, then you just have to laugh. If we hadn't been able to talk to each other freely about all our fears, we wouldn't have been able to share a laugh over how absurd this all was. (Our poor friend looked a little startled.)

Of course, this goes far beyond cancer. How often do we hide what truly bothers us, pushing aside what we really want to say or do because we are afraid of how others will react. I say, go for it! Speak about it. Be bold. You may find that you are less alone than you think, and you can laugh together rather than crying alone.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/dont-just-put-on-a-happy-face

Hope vs. Acceptance: The Metastatic Cancer See-Saw

When I was a kid, the playgrounds had the wonderfully simple see-saws that were nothing more than a plank of wood over a pivot point. We would play a game where one person would be all the way down, and the other all the way up.  That child would say,

"Farmer, farmer, let me down!"

The other would respond,

"What will you give me, Charlie Brown?"

And then a negotiation would ensue, with poor Charlie trying to get back down to earth. If the Farmer chose to, she could jump off the see-saw, sending Charlie plummeting into the hard cement. Ah, childhood.


As a metastatic cancer patient, I ride a see-saw between hope and acceptance. Thankfully, on my current treatment, there are days that feel almost normal, where cancer takes a back seat and it easy to hope that this could go on for some time. Then, of course, there are days that the knowledge of what I am facing leaps into my face and refuses to be ignored. The unrelenting nature of this disease can feel just enormous. Month after month of medications, scans, lines of therapy, side effects, weighing pros and cons of treatments, decisions and difficult choices, marching on into eternity. It's why the battle terminology rubs a lot of stage 4s the wrong way. Fight as we may, our "war" doesn't have a clear victory at the end. This is a marathon that lasts a lifetime, and the finish line is six feet under.

Yeah, acceptance.

Much has been written about the danger of false hope, about of the importance of accepting one's diagnosis and prognosis. I think doctors fear we don't understand the gravity of what we are facing, but perhaps they don't fully understand the sensation of sitting at the end of a miles-long see-saw, suspended stories above the earth, waiting to crash down.


The cancer has spread to your hip, your ribs, your spine and your liver.

Surgery is not an option.

There is no cure.

"Farmer, farmer, let me down!"

I have come to believe that hope is vital for those of us living with metastatic cancer. Without hope, the weight of our truth becomes too much to bear. I think there is nothing wrong with hanging on to a ray of hope to beat back the fear, to let you down more gently into acceptance, to, in the words of Dr. Martin Luther King, Jr., "hew out of the mountain of despair a stone of hope." That's one doctor that understood the power of hope! Hope allows us to dream of what might be. And dreams allow us to survive this nightmare.


Stage 4. Metastatic. Terminal.

Fear that every ache could be progression.

Another friend lost to cancer.

"Farmer, farmer!"

…and then I meet someone who has been living with this disease for over nine years.

… and I learn of a promising clinical trial.

… and I meet a stage 4 lung cancer survivor who has been off treatment for two years.

And I am lifted back up, Charlie Brown.


I am well aware that everyone's case is different, but hope softens the crash of acceptance. Perhaps there is a way to get that see-saw to balance acceptance of this disease with hope for more time here on earth. I strive to find that equilibrium.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/hope-vs-acceptance-the-metastatic-cancer-see-saw

Cancer: the World's Worst Houseguest

You are sitting down to a nice dinner when you hear a knock on the door. That's strange, I wasn't expecting anyone. You open the door a crack to see who it is. He shoves the door all the way open and barges in.

It's Cancer, the World's Worst Houseguest.

He walks right past you and leaves muddy footprints all over your carpet. You are in shock. You didn't know there was any chance of him coming over. It was the last thing on your mind, but here he is, lounging on your couch like he owns the place. Who is this? What is he doing here?

Once the shock wears off, you try to talk to him. How long will he be staying? Why did he pick you? He just shrugs, rolls over and goes to sleep, snoring loudly.

You start to question yourself. If only you hadn't left the porch light on, maybe he would have gone right past your house. The neighbors whisper that you never should have bought that welcome mat. And the charming walkway lined with flowers just encouraged him.

The visit drags on and on. The days turn into weeks, and before you know it he has been there for months destroying your house and turning your life upside-down. You are exhausted because he wakes you up at all hours of the night. He walks around in slippers and thick socks, saying that your floors hurt his tender feet. He has puked on the carpet and clogged up the shower drain with his constantly shedding hair. He alternately eats everything in sight and complains that your food tastes weird. You notice that a few friends have stopped coming over, and you know that it is because they can't stand being around this guy. You can hardly blame them; you don't want him here either.

However, you also discover that you have an amazing community that offers to bring meals, help out around the house, and even drive your nasty houseguest all over town to his various appointments.

As time goes on, you meet other people who have experienced this terrible houseguest. Yeah, the same thing happened to me. He showed up totally unannounced and made me adjust my whole life to accommodate him. You discover that you now have membership in a club that no one wants to join, and soon you are swapping tips with others. When he kept complaining that my food tasted funny, I got rid of the metal cutlery and started serving it with plastic. He said it tasted much better! You find that together you can even laugh at his bizarre quirks.

After a while you start to get used to him hanging around, but you never forget that he is there. When you are feeling relaxed and happy, you hear him run to the bathroom. Your quiet book and cup of tea are interrupted by his hacking cough from the next room. He is always present.

Finally, after a seemingly endless string months, you kick him out of the house. You celebrate your freedom, but even then you find yourself checking the closets, peeking into dark shadows to see if he might be hiding somewhere. You think you hear him following you late at night. And every few months you get a message from him. He's considering stopping by again for a visit, but he's not sure. You peek out the window and think you catch a glimpse of him turning the corner.

One thing is certain: your life is never the same again after you receive a visit from the World's Worst Houseguest.


Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/cancer-the-worlds-worst-houseguest

Dedicated to the Caregivers

Last night renewed my admiration for caregivers.

My husband and I were getting ready for bed when we heard a strange noise coming from our daughters' room. We ran downstairs and found one of the three-year-olds standing outside her room, mouth hanging open and making a horrible gagging, coughing sound. At first we thought she was throwing up, but then she kept trying to suck in air, and it almost sounded like she was choking. "Can you breathe?" She shook her head and tears rolled down her cheeks.

My husband donned his superhero cape while I grabbed her coat and hat. He whisked her into the car. I scraped the ice off the windshield while he buckled her into the car seat. And they were off.

I stood there and watched them drive away, feeling totally helpless.

How do caregivers do this?!?

Her sister had woken up, so that snapped me back to my senses.

Okay. Focus.

Get her sister back to sleep.

Run through nightmare scenarios in my head.

Check on the kids.

Feel like throwing up.

Fold laundry.

Check on the kids again.

Stare at the clock.

Calculate how long it takes to get to the ER, check in, see a doctor.

Check my phone to see if I missed a message.

Check on the kids 1,000 times.

Sit down.

Stand up.

Scroll through adorable pictures of the kiddos.

Turn my phone buzzer to max.

Stare off into space.

Jump out of my skin when I get a text.

It's just croup, she's going to be okay. They will be home in a few hours.


Finally exhale.

Breathe.

Breathe.

Focus.

Find humidifier.

Clean out humidifier.

Reflect on how caregivers live in this space of terror, being responsible and powerless at the same time.

Feel humbled and amazed.


I've been living with stage 4 lung cancer for a year and a half now. My husband has watched me struggle to breathe, seen me puke my guts out, taken me to countless doctor's appointments, taken over cooking a meal mid-stir when I was too exhausted to go on, run from floor to floor of the hospital parking ramp looking for a wheelchair for me, all the while keeping our household running and parenting our three small children. I have no idea how he does it. In sickness and in heath, indeed.

To all the caregivers out there, all you unsung superheroes, my admiration for you is greater than ever. Watching someone you love struggle to breathe, battle side effects, and deal with endless pain is its own kind of torture. We patients go through this because we have no choice. You do it out of love.

That, my friends, is truly inspirational.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/dedicated-to-the-caregivers

Superhero image courtesy of vectorolie at FreeDigitalPhotos.net

Recipe for Living with Metastatic Cancer

Some of these ingredients may seem hard to find, especially if you are newly diagnosed. But with a little searching (and soul searching), you can create something wonderful to sustain yourself through the hard times.

• First, you will need three heaping cups of support.

This support can come in a variety flavors, and many blend well together.

The first cup includes your close circle: spouse, parents, family, friends, relatives, neighbors, coworkers, religious groups, community groups. These people are all around you, and are the first to jump in. Since too much support can spoil the recipe, it helps to use a website like Lotsa Helping Hands, or an organized friend to coordinate your support.

The second cup is your cancer people. It begins with the medical staff, such as your doctors, nurses and social workers. I have found it enormously helpful to include the support of other people with cancer, because they know what I am going through both emotionally and physically and can serve as emotional and practical guides navigating these waters. Explore online groups and organizations as well as in-person support such as The Cancer Support Community, a national organization that provides online support as well as local chapters. Remember that there is also support for your caregiver and children, if you have them, in the form of caregiver support groups and child life specialists for young ones.

The third cup is money. Cancer is expensive, and even if you have good insurance, the co-pays plus the lost work can add up quickly. Consider allowing friends to do a local fundraiser or an online campaign. Many people with advanced cancer also qualify for Social Security Disability, so speak to your hospital social worker about this.

Remember, support is vital to having this recipe work out, so don't skimp on this ingredient because you are scared or ashamed to ask for help.

• Next, throw in two large handfuls of courage.

Sometimes the courage comes in big chunks, enough to sustain you for weeks. Other times, it is granules that are just enough to keep you going one moment at a time.

It is the courage to ask questions of your doctor, the courage to advocate for yourself if you feel that you are not getting the care and response you need. It is the courage to admit that you need help. It is the courage to go for a second opinion. It is the courage to discuss end-of-life issues and wishes. It is the courage to tell those closest to you about what you are facing, your worries, your dreams and your nightmares. It takes courage to admit that you don't feel positive all the time. Admit the fear, speak of the terror, stop being strong. Then, when you are ready, find the courage to keep moving forward.

• Melt and stir in a stick of knowledge, so that it spreads evenly throughout the mixture.

People vary on the amount of knowledge they like in here, but this ingredient enriches the whole experience.

When diagnosed with cancer, we are thrown into an entirely new landscape, and knowledge can give back some of the feeling of control that cancer tears away. Knowledge helps you know what expect, how to plan for what could go wrong, what the Plan B will be if/when this treatment stops working. With knowledge you can learn about clinical trials that may prove promising (even potentially lifesaving) for your particular case. You can find this knowledge from online cancer communities of others with your disease, from staying abreast of the latest research, from pressing your doctors for more information, and from talking to others professionals in the field.

• Throw in a dash of denial.

Without just a touch of this, the flavors can sour.

Sometimes the intensity of a stage 4 diagnosis can be simply overwhelming. I have found that I can't spend all my time focused on my dire prognosis. Sometimes, I just need to forget about it, try to forget that cancer exists, forget this thing living inside of me. So go ahead, splash in some denial – and if you're having one of those days, pour in the whole bottle. I won't tell.

• Finally, cover the whole thing with a generous dusting of hope.

This final ingredient pulls the flavors together and makes it all palatable.

Never underestimate the power of hope. In the darkest times, it can provide a single ray of light that keeps you moving forward. It could be the hope that you make it into a clinical trial, or that this next treatment buys you some more time, or that you will make it to the next birthday, or that you might just be the outlier that blows the statistics out of the water.

~~~

Of course, there is no one recipe that works for everyone. These are the things that have helped me navigate the emotional minefield of this disease. What about you? What ingredients do you put in your mix?



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/recipe-for-living-with-metastatic-cancer

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

The "Why Me" of Cancer

Cancer?!?

This can't be happening.

What did I do to deserve this?

Am I being Punked?

Is this my fault?

This isn't real.

Why me?

Cancer. The Big C. The malady that once was only spoken about in whispers. The Voldemort of diseases. With so much fear surrounding this diagnosis, is it any wonder we end up asking, "Why me?"

Why does a 14 year old vegetarian get bone cancer?

Why does a 37 year old non-smoking mom of three little ones get lung cancer?

Why would both patients be the same person?

~~~

When I was diagnosed with lung cancer, the first person we contacted (after my parents) was my pediatric oncologist. Could this be a very delayed recurrence of my osteosarcoma? Was this caused by treatment for my first cancer? Is there something about ME that explains how I got two cancers before the age of 40?

A biopsy answered the first question. No, this was adenocarcinoma of the lung. A totally different cancer than my childhood osteosarcoma.

My pediatric oncologist confirmed that this does not appear to be a late effect of prior treatment. Survivors of childhood cancers do face a slightly increased risk of subsequent cancers, based on what treatments were used for their first. However, the chemotherapy agents I had increased my odds of getting leukemia (very slightly). Lung cancer is nowhere on the list.

The third question was a bit trickier. She told me that I needed to get tested for Li-Fraumeni Syndrome, a rare genetic condition that makes a person highly prone to developing any number of cancers. The most worrying part about this is that I have three children. If I tested positive, each one of them would have a 50 percent chance of inheriting the syndrome.

How's that for maternal guilt?

Fast forward through CT scans, PET scans, a second bronchoscopy, genetic counseling, and sending DNA samples to be tested for Li-Fraumeni.

The bad news: the lung cancer had spread throughout my bones and into my liver. Metastatic. Stage IV. Incurable.

The good news: I do not have Li-Fraumeni. So, as far as they can tell, the second cancer is not part of a syndrome that my kids could inherit.

Those are some pretty heavy scales. But they tip in favor of the good.

That brings us back to the why.

The diagnosis of lung cancer carries with it a great deal of blame. There is the sometimes-spoken-usually-thought question that lung cancer patients face: did you smoke? While it is certainly true that some lung cancers are caused by smoking, 10 to 15 percent of people diagnosed have never smoked (like me), and another 40 percent have quit and were living smoke-free. Also keep in mind that the older folks started smoking when it was the norm (seriously, even doctors promoted smoking back then). Sadly, lung cancer kills more people than any other cancer – more than breast, prostate, and colon cancers combined. Despite this, lung cancer research receives a fraction of the federal funding of other cancers. And it boils down to blame.

~~~

Why me? Why did I get cancer?

Well, it must be because you smoked. No?

Well, then it must be caused by previous treatment. No?

Well, then it must be caused by a genetic condition. No?

Well, then it must be caused by lifestyle choices. No?

Well, then it must be caused by second hand smoke. No?

Well, then it must be caused by radon. No?

Well, then it must be caused by pollution. No?

Well, then it must be because you prayed to the wrong god.

Well, then it must be some sort of cosmic joke.

Well, then it must be punishment for mistakes in a past life.

Because it must be YOUR FAULT.


I don’t think people follow this line of thinking to be cruel (most of the time), but rather to distance themselves from the illness. I didn't do X, therefore I could never get Y. I'm safe and can carry on without worry.

Every day we make choices about how we live. Did you choose the salad or the steak? Did you ride your bike or drive? Did you sleep a full eight hours? Did you meditate? Did you exercise?

Of course we should make healthy lifestyle choices. But we are all human, wonderfully beautifully flawed human beings. And sometimes even when you make all the "right" decisions, life has other plans.

~~~


So, why me?

Why me?

. . .

Why does it matter?

What about you? Have you had a "why me" journey? I welcome you to share your story in the comments.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/the-why-me-of-cancer

Repeat Visitor to Cancerland or The Worst Vacation Destination Ever

One of the things I love about reading blogs is their immediacy. They are typically written in a moment of heightened emotion, in response to a life event. They are raw.

In my new adventure blogging for CURE magazine, I am going back to the beginning of my cancer journey to catch those readers up to where I am now. I am able to reflect on moments that were too intense at the time to fully process. In my first post, I talked about the terrible moment in May of 2013 when I was diagnosed with lung cancer. The overwhelming emotion at that time was shock. I felt frozen and unable to think clearly. Looking back now, I can attempt to explain what it felt like, hopefully reaching out my hand from the shore, helping others navigate that awful fog.

I realized that I couldn't talk about my current adventure with cancer without revisiting the first time, twenty some years ago when I had childhood osteosarcoma. So here is a glimpse at the early days of diagnosis, the first time around.

You Have Cancer. Again.

If that link doesn't work, try this one. You Have Cancer. Again.

You Have Cancer. Again.

The first time I heard that dreaded phrase, I was 14 years old. I had taken up a juggling hobby (make that obsession) and had been practicing for many hours a day. My right shoulder had started to ache, so we all assumed it was from overuse. I tried to back off a little, but the ache continued. One evening, I was juggling clubs at The Juggling Club and I threw a high double and caught it in my right hand. I heard a snap and felt excruciating pain shoot down my arm. I dropped the club I had just caught, and the ones in the air clattered to the ground. The room full of jugglers turned to look. I gritted my teeth, smiled and said, "Oops! Ha ha, I'm just … gonna go get a drink of water," and I rushed out of the room. Once in the hallway, I collapsed against the wall and tried to figure out what had happened. I could barely move my arm and it hurt, oh how it hurt.

~~~

It was already late, so I told my mom I was too tired to go the emergency room, let's wait until morning. It's probably nothing, may as well get a good night's sleep first. A couple of ibuprofen should dull the pain.

~~~

The ER doc thought it was most likely some sort of muscle strain, and that the noise I heard was the joint popping. "Let's take an X-ray, just to be safe."

His face when he returned with the films . . .  the look on his face told me it was not good.

"It's not what we expected."

He put the X-ray up on the board and we saw that a large tumor was filling the head of my humerus. The weight of a single juggling club had caused this weakened bone to snap.

I had heard my bone break.


My mom's face.

The doctor's face.

I picked up a magazine and pretended to read.

~~~

My best friend's dad was the pediatric oncologist available that morning. Now that I'm a mom, I can't imagine having to tell my kid's best friend this terrible news, to look at the parents that I know so well and say that heartbreaking diagnosis. Osteosarcoma. Chemotherapy. Surgery.

"But I'm in a play. I can't have cancer."

"We will do a biopsy to confirm. If it shows cancer, we will put in the portacath while she is still under anesthesia. We will need to start treatment right away."

~~~

As we drove to the biopsy that cold October morning, I looked out the window and thought to myself, "Thus begins the winter of my life."

So dramatic!

~~~

When the first wisps of consciousness lifted me out of anesthesia, I immediately felt for a port along my ribs. It was there. So it was confirmed.


You have cancer.


And now, over 20 years later, I am back in Cancerland. This time it is stage 4 lung cancer. So much is the same, and so much has changed.

The first time I heard those words I was terrified of needles. I was terrified of the hospital. I was terrified of losing my hair. I didn't think about dying, all my fears were focused on the really really really difficult chemo regime it involved.

The second time I heard those words, I was terrified of dying. I was terrified of missing my children growing up. I was terrified that they would never know their mom. I was terrified of not holding my end of the bargain with my husband, we were supposed to grow old together, raise our children together, build our lives together. How could I skip out on all that?

"I can't have cancer. I have three small children."

I made it through then, I can make it through now. Of course, now there isn't a "through." Now there just is. Just this, just now, just treatment and side effects, hoping I don't run out of options. Hoping the meds can keep one step ahead of the disease. Hoping that science keeps pace with my cancer. Hoping all the promising research pans out in time for me to use it.

Now I need to stick around for the next big thing.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/you-have-cancer-again

Blogging for CURE

In an exciting turn of events, I've started blogging for the cancer publication CURE. They publish both a magazine and web content, and I am looking forward to sharing my story with a new audience in the hopes of educating and helping more people who are on a cancer journey. CURE provides Cancer Updates Research & Education to patients, caregivers, and people working in the field of oncology. The magazine has recently brought on several bloggers in an effort to give readers a more personal side of the patient experience. I'm very happy to be one of them.

I'm still figuring out how I will coordinate blogging in two places, but I think I'll have some posts that are just for you, my awesome readers, and some that are for a larger cancer community on CURE, but I will provide a link to those here on my blog.

Full disclosure: CURE pays me a few pennies (literally) for each person who clicks on my articles. So, if you would be so kind, take a moment and click on my post below. And if you enjoy the read, please pass it along to your friends.

The first several posts on CURE will be catching those readers up on my cancer experience so far. My initial post (below) deals with the terror of the first few weeks after diagnosis. I welcome any feedback you have, either here on my blog or on the comments section over at CURE.

Knowledge is Power: A Cancer Patient Navigates Her Diagnosis

Edited - some people were having trouble with that link on certain browsers. If it doesn't show, try it here: 
Knowledge is Power: A Cancer Patient Navigates Her Diagnosis


**Housekeeping note**

Some people have asked how to know when there are updates on this blog. If you are reading on a desktop, look over to the upper right hand side for the "follow by email" box. Just put your email address in there and click submit.

If you are reading on a mobile device, scroll down to the bottom and you will find the "follow by email" box. Put your email in there, click submit, and you are all set.

Best of Lung Cancer Awareness Month 2014

"...be inspired and punch a hole in the wall of numbness and dumbness. And now is the time to do it. It's going to take a very strong person to punch that hole. But that person or persons will lead the way to the next place. One just sits and waits for the rumpus to begin."  - Maurice Sendak

The Lung Cancer Awareness advocates have been busy! While we didn't have sports teams and cheerleaders wearing pearls or white ribbons for us, I think we had better visibility than last year. We are making progress in reaching more people, and equally as important, we are growing stronger as a community. As my friend and fellow lung cancer blogger said so well, "We may be low on funding, but we’re big on community." (If you haven't read it before, click on that link for a wonderful post about the life-altering power of community.)

There were thousands of inspiring and educational videos, blogs, stories, tweets, and articles during the month of November. Since it would take a long time (like, a month) to repeat them all here, I will instead highlight a few of my favorites. So grab some popcorn and settle in to enjoy this Best Of #LCAM14.

Best Infographics

 

• Who doesn't love an acronym?

• I hate to admit it, but I think I was one of them. Are you?

• DustyJoy.org created an entire alphabet of facts about lung cancer.

Post by DustyJoy.org.

• LUNGevity challenged lung cancer patients, caregivers, and advocates to take pictures of themselves wearing a LUNGevity band and holding facts about lung cancer. The goal? To educate and change the face of lung cancer. 

• Damien (aka @CoolioUserName), a fellow lung cancer traveler, created a whole slew of awesome graphics. Here are a few of my favorites.

Best Blog Posts

•  Oren Miller, a young dad with stage IV lung cancer, shares what he has learned from living with this disease. His beautiful post reads like a love letter to his family. "I Am A Dad With Stage 4 Lung Cancer, And Here's What I Know Now"

• Lisa Goldman, young mom and fellow ROS1er wrote this funny, snarky post that asks what we need to do to raise awareness for this disease. "Lungs. They're Right Under Your Boobs! (Celebrating Lung Cancer Awareness Month)"

Bonus - because of the great response to her new slogan, Lisa created some merchandise, and the proceeds from the sales will go to the Bonnie J. Addario Lung Cancer Foundation.

Best Videos

• Terrified by the awful statistics? Need some hope? Then watch the remarkable Linnea Duff, a 10-year (yes, you read that right) survivor of stage IV lung cancer, as she talks about living with lung cancer. "It's Possible to Live WITH Cancer | GRACE :: Lung Cancer"

• Lace up your gloves, folks, the Bonnie J. Addario Lung Cancer Foundation is asking you to join the fight. This video takes us back to the first days of the war on cancer, and looks at where we are today. "Addario Lung Cancer Foundation - Join the Fight!"

• I really hope by now you know more than 99% of the women in this survey. Watch the LungForce video "Women's Lung Health Barometer" to make sure.

• For the past year, Molly Golbon has allowed a camera crew to follow her experiences as a young mom with stage IV lung cancer. I cannot fathom the courage it took for her to let them film her getting scan results. She must be made of steel. I think I speak for the whole lung cancer community when I say a heartfelt thank you to her and her family for opening up their lives to help educate the nation about this disease. Please take the time to watch this amazing documentary. "Molly's Journey: Living with Lung Cancer."

Well, there you have it. What a remarkable month. I am so proud of the lung cancer community. Let's do it even bigger and better next year!

Knowledge is Power: A Cancer Patient Navigates Her Diagnosis

Knowledge is power.

This belief has driven how I respond to stressful situations throughout my life.

When I was pregnant with our first child I took every class I could find, read stacks of books, and watched many hours of birth videos (thanks to my midwife sister).

I focused. I studied. I prepared.

When I found out that our second pregnancy was twins, I read books and asked questions of every twin I knew. As the pregnancy progressed and took a complicated turn, we were told that the girls may be born severely premature and if they survived they would face a lifetime of challenges. In response, I started reading about raising children with special needs. I subscribed to blogs written by some amazing families with special children. I got ready for every possible scenario.

I focused. I studied. I prepared.

When I was diagnosed with metastatic lung cancer, I dove into the research and tried to learn everything I could about this disease.

Actually, that's not quite true.

For the first few weeks I was in a fog of confusion, denial, shock. In those early days I felt completely frozen. It was as though there was an avalanche of emotion waiting to engulf me, and any wrong move could set it off. I couldn't even listen to music, because the feeling of the notes caused the ground around me to vibrate and I knew if it shook too hard the walls would collapse and I would be crushed under the weight of my reality.

For the first few weeks I actively avoided reading anything about lung cancer. I knew enough to understand how dire my situation was. I couldn't face seeing it in black and white.

I had to absorb the news in tiny droplets, taking in a little bit more every day. Drop by drop, I started to accept it. As the weeks went on, I started to face my diagnosis. My coping mechanism for tough situations had always been to seek out knowledge and turn to information for comfort.

I took a deep breath and started reading.

And what I read was scary. The stats were bleak, and they were staring back at me unblinking from the page.

I knew that I had non-small cell lung cancer.

I knew that I was only 37 years old.

I knew that I had three kids under the age of 5.

I knew that I may not be around to see them grow up.

I knew that it had spread from my left lung to my ribs, my spine, my hip, and my liver.

I knew that there was no cure.

I knew that I had a really rough road ahead of me.


I knew that I was ready to take the first step on that path.


Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/knowledge-is-power-a-cancer-patient-navigates-her-diagnosis

If Not Me, Then Who?

As I hope you know by now, it is Lung Cancer Awareness month, and the members of the LC community have been working our lungs out (see what I did there?) to educate and raise awareness about this horrible disease.

A heartfelt thank you to my friends and family who have put up with me going on (and on and on...) about lung cancer awareness. But it means a lot to me. Obviously.

During this week, this week of thankfulness, 3,000 people in my community will die from this ignored, underfunded, misunderstood, and stigmatized disease. 

3,000 people.

In this week of Thanksgiving I am constantly reminded of just how freakin' lucky I am to still be around today. I can breathe. I can speak. I can write. Too many people in my community are no longer able to do so.

I speak out for myself and on behalf of those who no longer can. I keep talking about it, because so far I am not one of the 3,000.

I keep advocating because I still can. If not me, then who?

As part of the effort to educate and raise awareness, I have been posting images, stories, and facts each day on my Facebook page. If you haven't yet, please join us on the Lil Lytnin' Facebook page.

I also had the opportunity to share my story on a few other platforms. Click through each link to read the articles.

For the first time in my lung cancer advocacy career, I wrote for a non-cancer-related site, Parents Magazine.

| The Parents Perspective

 

I guest blogged at Livestrong.

A Survivor Story: Tori Tomalia

Lung Cancer Awareness Month (#LCAM) got some nice coverage on NBC news and I got to share my story again, this time alongside two awesome women, Emily Bennett Taylor and Arielle Densen.

Lung Cancer for Nonsmokers Still Stained by Stigma - NBC News

By the way, I swear I have submitted other photos to these media outlets, but they always choose this one. I can't blame them, Edda did an amazing job with it!

I also made an online quiz, a fun, interactive way to learn something about lung cancer. 

What do you know about cancer?



So there's a recap of what I have been working on over the past month (I mean, in addition to juggling side effects, raising kids, living life, helping start a business, etc.). Don't think I have forgotten about the outstanding people and groups that have been doing great things for LCAM14. I will have a "Best Of" list in a subsequent post. Stay tuned!

Breathing Easy

All is well in scanville! I've just passed my one year mark on the wonder drug Xalkori, and now I can breathe (relatively) easy until my next scan in three months.

Speaking of breathing, here is one of my favorite lung cancer infographics. 

At 3 pm EST today I will be participating in the WEGO Health Activist Twitter Chat (#hachat), which today is focused on lung cancer. Lung cancer bloggers Linnea Duff (@1111linno) and Samathan Mixon (@mixon_samantha) will also be participating, and my fellow ROS1er Janet Freeman-Daily will be guest hosting.

We will be addressing these questions:

• Q1: Why do you share your lung cancer journey online? What motivates you to write a post?
• Q2: What kind of info do mbrs of online lung cancer community want? What messages do you try to convey?
• Q3: On which social media sites do you share lung cancer info? How do you choose what info to share on different sites?
• Q4: How/where do you find content about lung cancer that you want to share? What makes content you find share-worthy?
• Q5: How has the lung cancer information you share changed over time?
• Q6: What reactions do you get to your lung cancer blogs and social media posts? What content gets viewed or “liked” most?

Please join us! It should be a lot of fun. 

Superstition

"Security is mostly a superstition."
- Helen Keller

I like reason and facts. I question everything, and always want to see evidence. I think I am a pretty sensible, level-headed person.


And yet....

I wear the same socks for each CT scan.

I wear my favorite shirt for each appointment where I get scan results.

I wear two "charmed" necklaces every day.

And I have saved every empty bottle of my cancer drug Xalkori.

Saving my first bottle of Xalkori didn't seem so strange, since it was such a momentous occasion when we found my driver mutation and I started taking this magic medicine. And then I kept the second bottle so the first wouldn't feel lonely, and by the time I got the third bottle I couldn't bring myself to throw that one away because the medicine was working so well. So now here we are, a year later, and I have over a dozen bottles cluttering up the shelf. Ridiculous, yes, but that totally irrational part of me thinks that maybe if I get rid of the bottles the medicine will stop working.

Superstitions make sense, really. When it comes down to it, we actually have no control over anything that happens in this life, as much as we like to think we do. The road twists and turns as we travel along, and all we can do is hold on and keep moving forward. Little trinkets and good luck charms give us something to cling to as the winds of chance try to knock us off our feet.

It's scan time again, which has me feeling extra punchy and on edge. On Friday I will drink the oh-so-yummy contrast solution then lay myself at the feet of the imaging gods as the machine takes pictures that determine my fate. On Tuesday, the wizard will reveal my future.

If I have snapped at you or been irritable in the past few days, please excuse me. Scanxiety is a nasty beast. Excuse me while I go curl up with my shelf of empty pill bottles.