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**

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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