Adventures in Brain Metastases

I am not new to the world of cancer. I survived childhood osteogenic sarcoma, and have been living with stage 4 non-small cell lung cancer for two and a half years. I have had my share of chemotherapy drugs (adriamycin, ifosfamide, methotrexate, carboplatin, Alimta, Avastin), I have had several radical surgeries to save my right arm, and I have been benefitting from a cutting edge targeted therapy. But, with all of these treatments, the one I have never experienced is radiation.

Until this past Monday, that is.

As I wrote about in "The Other Shoe," my regularly scheduled MRI showed that while the targeted medicine I take for my ROS1 mutation is doing a fabulous job controlling the cancer in my body, some sneaky cancer cells made it into my brain. So, on Monday, I had the super fun experience of stereotactic radiotherapy.

The morning started bright and early with a 7:00 a.m. check-in. I was told to take my Valium and Norco in the parking lot, so that they would start working by the time it came to put on my fancy head piece. You see, because the machine is precise to the millimeter, they need to hold the patient's head completely still. They achieve this by using this wonderfully attractive piece of hardware:





They numbed my scalp with lots of lidocaine and proceeded to clamp what my husband described as "skateboard hardware" onto my head. Seriously, it looks like stuff you would find in your basement workshop.



Next, they took me to have a CT of my head, with my fancy headgear clamped into the machine so that they could plan out exactly how my head would match up with their lasers.

By now, it was about 9:00 am. Frankly, the worst part of the whole experience for me is that I don't tolerate narcotics well at all. I know morphine makes me throw up, and I guess Norco is a close enough cousin to have a similar effect. By this time, I was feeling pretty green, but a dose of Zofran helped enormously. Then, I just had to wait around for several hours while they did all the planning for the actual treatment. I had packed the iPad and earphones, planning for my husband and I to watch movies while we waited, but alas, I didn't realize I wouldn't be able to wear my glasses with the headgear! Here is my attempt to balance them on the contraption. Total fail.





So, my amazing husband/caregiver Jason and I just sat around and chatted for a few hours. I got used to the headpiece fairly quickly, and it soon just felt like I was wearing a very heavy hat.



At noon, they had me take a dose of dexamethasone, a steroid to reduce any swelling from the radiation to my brain. The treatment was scheduled for 1:30 p.m., so at 1:00, they had me take another Valium and norco. By the time they wheeled me back for treatment, the duo was kicking in and I actually slept through the whole process. I remember them clamping my headpiece into the machine, and asking a few times how I was doing, but the next thing I knew they said, "OK, we are all finished!"

They removed the headpiece and sent me on my way. By now, the Norco-nausea was pretty bad and I promptly threw up upon getting home. Yay, narcotics. I slept most of the afternoon and evening. The next day, I felt groggy and had a pretty intense headache, but I decided to go the Tylenol route (no more Norco for me!) and that actually helped take the edge off quite a bit. By Wednesday, I was feeling much more like my old self, just a bit tired, and I still have patches of my scalp that are numb, which is a bizarre sensation.

I will have a follow-up MRI in January. Radiation keeps working for many weeks, so they won't know until then how it went. Fingers crossed that this is just a little bump in the road and I can keep going along with my targeted med Xalkori. I continue to marvel at modern medicine!




Originally published at: http://www.curetoday.com/community/tori-tomalia/2015/10/adventures-in-brain-metastases

Cancer On My Mind

Ha ha - I couldn't help myself.

My dedicated readers will recall from my last post, "The Other Shoe," that although Xalkori continues to be totally amazing at controlling the cancer in my body, it is not doing so hot in my brain. 

So, as I predicted, I have amped up my participation in the medical appointment world, and have seen a radiation oncologist, a neurosurgeon, corresponded with several lung cancer specialists, and had a high-definition MRI. Having cancer is definitely a part-time job. But on the upside, I now have a RAD onc!

Both the rad onc and the neurosurgeon expressed some skepticism about the two tiny spots that the MRI picked up, questioning if those were even brain mets at all (there was no question on the 9 mm one). The repeat MRI used 1-2mm slices rather than the standard 5 mm slices, so that they could get a very high definition picture of what was going on in my brain. The stereotactic radiosurgery (SRS) is highly precise, so they need to know details down to the millimeter.

The good news is that, as far as they can tell, the two tiny spot were not actually mets at all, so there is just one met to treat. Who would have thought I would be happy about being told I have one brain met? It's all about perspective. Maybe they should take this approach with all diagnostic testing.

My SRS is scheduled for Monday, October 26. They do the planning scan in the morning, then I hang out all day while they sit around and chat plan my "brain surgery" (that involves no cutting), then they do the procedure that afternoon. They said to expect to be pretty wiped out the next day, but I shouldn't experience any major side effects.

Oh, technology!

On the home front we have done some major rearranging of the rooms in our house. It is something we have discussed several times, but hearing that the cancer is on the move again pushed us to take the plunge. The kiddos now all share the largest room, an odd-shaped attic space that is actually a much better room for kids than it was for Jason and I. Parts of the room are too small for an adult to stand upright, and there are weird little nooks that were kind of wasted space for us. Now the kids have an art nook, and dress up corner, and a comfy reading spot. And they are still young enough to think it is cool to all share a room. Jason and I have one of the rooms downstairs now, and the other room is a guest room/study. Knowing that we have a space where grandparents can sleep when they help us out is a great comfort, and it helps ease the worry that we may be needing more help in the future.

AND I got to do something I've wanted to do since I was a kid. I always said if I ever owned a house I wanted to paint it. Not in the normal paint-a-wall way, but to just grab some paints and start decorating it. So, we all did just that and painted the stairwell leading up to what is now the kiddos' room. The kids have asked if we can do this every day, and there are still blank spots, so why not?

The Other Shoe

From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment.

But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine.

I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1-positive folks like me. However, it is well known that Xalkori has one weakness, its Achilles' heel: It does not cross the blood-brain barrier. Any cancer cell that manages to slip into the brain can grow freely, unhindered by the medicine.

I bet you can guess where this is going.

My regularly scheduled brain MRI revealed three very small spots where the cancer has taken up residence in my brain. They are tiny and are not causing any symptoms. Thankfully we have been proactive and have been doing brain MRIs every six months to catch this early (if you are on Xalkori and not getting regular brain MRIs, push to get this done). The plan is to get stereotactic radiosurgery, a kind of pinpoint radiation that zaps the tiny metastases. It is brain surgery without the cutting and supposedly there are minimal side effects.

How do I feel about all this? I am strangely OK. I mean, it sucks really bad, but I have been so very terrified to get bad news that in some ways it wasn't quite as terrible as I imagined. After two years of amazing results, the other shoe finally dropped. What this means now is more appointments, more doctors to add to my team and another treatment notch in my belt. They say a criminal finally sleeps well the night he gets caught. Something I dreaded so much has happened, so I can't dread it anymore. Plus, there are still treatments, still reasons to have hope.

This isn't the end by any means. But it is a nasty reminder that the cancer is still there, still working against me, still threatening to take me away from everything I love.


Originally posted at: www.curetoday.com/community/tori-tomalia/2015/09/the-other-shoe

Small But Mighty: ROS1ers Unite!

The times are a-changin' in CancerLand. Gone are the days when you simply had breast cancer, lung cancer or leukemia. Now each has its own specific type and these days you can often discover what precise mutation is driving the cancer. As I discussed in my post "A Personal Take on Personalized Medicine," my cancer is driven by a mutation called ROS1.

In many ways, knowing this is a GREAT thing. When we found out what was driving my cancer, I was able to stop chemo and instead take a pill called Xalkori (crizotinib) that has been controlling my cancer for close to two years. That's fantastic! So what's the downside, you may ask?

Well, of the over 220,000 new cases of lung cancer each year, only about 1 percent of those have the ROS1 mutation. While being unusual may have a nice charm to it, from a research point of view, it is pretty crummy. Why would researchers focus their efforts on helping such a tiny fraction of people? Us ROS1ers lucked out by riding on the coattails of research for another mutation, ALK, and the drug that I take is actually only FDA-approved for ALK-positive lung cancer. There is no FDA-approved medication specifically for ROS1 lung cancer, it was just a happy coincidence that Xalkori works well for ROS1.

For the time being, this is not a problem. I will keep taking my off-label magic pills for as long as they work. But therein lies the problem — almost certainly, they will stop working someday. There are a few other drugs in trials for ALK that also look like they should work for ROS1, but at some point us ROS1ers have to stop tagging along with our cousin ALK and get some research focused on us.

And herein lies the opportunity. Because we now have the remarkable ability to sequence a person's tumor and discover the driving mutation, ROS1 mutations have also been discovered in colorectal cancer, glioblastoma and others. There are now revolutionary trials underway that are not for lung cancer or breast cancer or prostate cancer, but rather for specific mutations regardless of where they are in the body. Fascinating stuff!

It is true that us ROS1ers make up a tiny fraction of the lung cancer population, but when you add together all of the other ROS1-driven cancers out there, our numbers no longer look so puny. Together we make a group that is worth researching and worth saving. When patients unite, they become powerful activists. If you don’t believe me, read about how a group of lung cancer patients and caregivers petitioned to change the surgical guidelines for stage 4 — and they succeeded! (See "Empowered Patients Change National Cancer Guidelines")

So if any of you out there have a cancer driven by ROS1, please leave a comment below or find me on Facebook or Twitter. I would love to hear more about your treatment experiences and discuss how we can help each other.


Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/09/small-but-mighty-ros1ers-unite

A Monster Calls

 
I just finished an incredible young adult book. It is the kind of cancer book I would want to write if I ever write a cancer book. It has monsters and talking trees and tells the truth the way only fiction can. It is so very sad, and it gives me hope. Not the I-think-I-might-be-around-for-a-long-time kind of hope, but the scary, painful, they-will-still-be-okay kind of hope.

"Stories are important, the monster said. They can be more important than anything. If they carry the truth."

The illustrations are stunning, so here is a "book trailer" (I guess that's a thing now?) that gives an overview and shows some of the amazing artwork.




The book was written by Patrick Ness, but as he explains in the Author's Note, the story was conceived by Siobhan Dowd. "She had the characters, a premise, and a beginning. What she didn't have, unfortunately, was time." I'm sure you can guess what caused Ms. Dowd's death at age 47.


Zander saw me reading the book and asked me, "But I thought you didn't like to read scary books? I thought you said scary books and movies give you nightmares?"

What I said: "...Oh, I don't mind some scary books."

What I didn't say: "I already have nightmares about the stuff in this book. Reading it helps me deal with the fears."

To all my cancer pals out there with young children, give this book a read. Or don't. It is powerful and beautiful and very painful, but I'm so glad I read it. When my kids are older, I think they might want to read it, too.

The book is being made into a movie, to be released in October 2016. And my first thought was the same first thought I always have when I think of something scheduled for the future.

I hope I'm still here to see it.

7 Chemo Pro Tips

Thanks to my awesome targeted medicine, a pill that I take twice a day, it has been almost two years since I have been on IV chemo. While my scans still look great, my hemoglobin is low so I am having several weeks of iron infusions. I am so out of practice with IV medicine that I had forgotten all the hints I picked up during my time in the chair. I couldn't believe all the newbie mistakes I made, so I am writing down some tips here to help myself and you, my lovely readers.


1) Hydrate

Fluids, fluids, fluids. Drink as much as you can the night before and the morning of your infusion. This will make it easier to find a vein for the IV, and it will help to flush the chemo out. I was kicking myself that I forgot about this when I went in for my infusion. After the third failed attempt at starting an IV I realized that the half-glass of apple juice I had had that morning just wasn’t going to cut it.


2) Pass the Salt

This goes along with no. 1, but I would always have a salty dinner the night before chemo to help keep me nice and thirsty. (Note – I have low blood pressure naturally, so salt is my pal. If you have blood pressure issues, go easy with this.)


3) Get Hot

I mean this is the most literal sense. I used to wear long sleeves and a sweater, and would sometimes even leave my coat on in the waiting area to keep my body temperature up. This helped my veins to dilate, and become nice and visible to the people starting the IV.


4) Distractions

I foolishly showed up for my 10 a.m. infusion with nothing to occupy my time, thinking I would be in and out quickly. HA! When they finally started the IV an hour and a half later, my phone battery was just about gone and I was left twiddling my thumbs for the next hour or so. When I was going through chemo, I would always bring a tablet, headphones, and a charger and would settle in for a nice movie festival during the long wait and infusion. My husband and I would turn it into a bizarre date night. Hey, you gotta make your fun where you can.


5) Snacks

Infusion days tend to be very long, so pack a couple of easy-to-eat snacks. I find that an empty stomach is an upset stomach, so keep something in your belly to stay ahead of the hunger. Many cancer centers also have a snack room, so have a poke around there and see what takes your fancy.


6) Germs

Your doctor should be able to predict how many days after your infusion your immune system will weaken. I managed to go through four months of chemo with a kindergartener and two toddlers in the house without getting sick. It is possible! During my low white blood cell count days, I would wash my hands very frequently (some might say obsessively), and I would avoid touching my face. I never realized how often I would scratch my nose or rub my eyes until my physician's assistant explained that this is how most viruses get passed between people. Try it, you will be amazed how often you touch your face in a day.


7) Meds

Chemo is notorious for causing a whole host of side effects; some of the most common are nausea, diarrhea and constipation. Talk to your doctor about these possibilities before your infusion so you can have the medications on hand when the side effects hit.

Now it's your turn. What tips have you learned from your time in the chair?


Originally posted at www.curetoday.com/community/tori-tomalia/2015/07/7-chemo-pro-tips

Fear Less

The heart may freeze or it can burn
The pain will ease if I can learn
There is no future
There is no past
Thank God this moment's not the last
There's only us
There's only this
Forget regret — or life is yours to miss.
No other road
No other way
No day but today

- Lyrics from"No Day But Today" (from the musical "Rent")

Scan time is looming large on the horizon, so in addition to trying to take my own advice (see "10 Tips for Coping with Scanxiety"), I have been ruminating on the meaning of fear.

Why is scan time so scary? First, there are lots of little fears that flit around my mind, such as...

• I'm scared the IV will hurt.
• I'm scared the contrast drink will make me throw up.
• I'm scared that I might have some weird allergic reaction to the injected contrast dye.
• I'm scared that when they inject the dye and it makes you feel like you wet your pants, that I might actually wet my pants.
• I'm scared that I might breathe in when I'm supposed to hold my breath, or breathe out when I'm supposed to breathe in.
• I'm scared that I might reach to scratch my nose when I am supposed to be holding still in the scanner.

But, of course, there is the one fear, the real fear, the one really big fear: The scan might show that my medicine has stopped working.

I used to do partner acro, and my instructor described me as "fearless." While it was a nice compliment, it was completely inaccurate. I certainly was not without fear, it was just that my desire to learn and push myself was much greater than my fear of getting hurt. The thrill of flying was much stronger than the fear of falling.

Now, my fears have shifted. Everything boils down to the one big fear that the medicine has stopped controlling my cancer. If that happened, it would mean pursuing new treatment and facing new side effects. It would mean that one of my limited options is used up. It would mean facing the fear that my time on earth is much, much shorter than I would like it to be and that this disease will take me away from the life and the people I love so much.

I was never "fearless," but now I do have less fear. I have less fear about little things, less fear about speaking my mind, less fear about taking chances and less fear about what other people might think of me. I have one giant fear that trumps everything else and that puts it all in perspective.

My drive to get everything I can out of this life is much greater than all the little fears. We only get this one life (I think), so it only makes sense to grab on tight and get all the living you can out of it.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/06/fear-less

I Wish My Doctor Knew / Leading Us Through CancerLand

You feel a lump.A bump.
A something-isn't-right.
You walk into the doctor's office.
Your heart is racing.
You can't breathe.
You see your future disappearing before your eyes.

Clipboard
Forms
Insurance
Blood pressure
Temperature
Weight
Check
Check
Check
I wish my doctor knew
check
I wish my doctor knew
check
I wish my doctor knew
check
What it feels like
check
to be a patient
check
to have to be a patient
check
to have to be patient
check

White coats
Cold hard statistics
Medical jargon diagnosis
Gobbledy goop prognosis           
Protcols
Hear me!
Standard of care
See me!
Aggressive
Know me!
Maintenance
Love me!
Stable
check
check
check
check

Know my fear.
so scared
Take my life in your hands.
all control is you
I am more than my diagnosis.
know my heart
You hold all the power.
your words swim around my head
I wish I was your one and only.
please treat me like your one and only
You don’t want to give false hope.
it’s the only thing keeping me from drowning
You hold my hand
Check.

Please guide me
Not just my body
But me
Not just my body to healing or healed or at-least-not-dead-yet
But me, my whole me, my whole self
Please know how much it hurts
Not the body, but the knowing
Please pretend that you care.
I wish my doctor knew.


Originally posted at: www.curetoday.com/community/tori-tomalia/2015/06/leading-us-through-cancerland

Your Heart's Desire

"Can you think what the Mirror of Erised shows us all?" Harry shook his head.

"Let me explain. The happiest man on earth would be able to use the Mirror of Erised like a normal mirror, that is, he would look into it and see himself exactly as he is.... It shows us nothing more or less than the deepest, most desperate desire of our hearts. You, who have never known your family, see them standing around you."

- Dumbledore, from Harry Potter and the Sorcerer's Stone

I am one of the lucky ones who, despite a diagnosis of stage 4 lung cancer and the terrible prognosis that goes along with it, is doing remarkably very well on a targeted medication. Yes, I deal with side effects, like my ongoing stomach issues ("Mommy has a sore tummy") and I sleep much more than the average mom of three small children. Compared to where I could be, I am doing fabulously well. So well, in fact, that cancer often takes a back seat for our family. It is always there, of course, lurking in the background, but often we can mostly ignore it.

Sometimes, however, its impact sneaks up on me in the least likely of places. Take, for example, when I am reading "Harry Potter" to my six-year-old son.

"However, this mirror will give us neither knowledge or truth. Men have wasted away before it, entranced by what they have seen, or been driven mad, not knowing if what it shows is real or even possible.... It does not do to dwell on dreams and forget to live, remember that."

"Mama," he interrupts me. "Mama, I'd be like Harry."

"… Like Harry?" I asked.

"If you died, the one thing I would want most of all is to see you again," he said.



This simple remark left me frozen in my tracks. I was left speechless. I was trying to process his words with the knowledge that, in all likelihood, this is indeed something that he will face.


How do I prepare my children for the future?


So we talked about Dumbledore's sage advice, that if you get lost in what you wish could be you will end up missing out on the life that you get to live. Harry's parents are gone, and no amount of gazing into that mirror will bring them back. His parents would want him to relish the life he has, and find the joy that is his to discover.


It is impossible to ignore how profoundly my illness has impacted our family. But, as I remind myself over and over (and over and over), none of us are promised tomorrow. All we can control are the choices we make today, and the life that we lead from moment to moment.

"It does not do to dwell on dreams and forget to live, remember that."

If I looked into the Mirror of Erised, I think I would see my husband and I growing old together, watching our children grow up and become the remarkable adults that I know they will be.


Has cancer changed you? Do you live your life differently now? And if you looked into the mirror of Erised, what would you see?



Originally published at: www.curetoday.com/community/tori-tomalia/2015/06/your-hearts-desire

Cancer as Rebirth

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

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

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

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

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

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

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

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

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



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

The Changing Face of Cancer Care

I've had a ringside seat to the evolution of cancer care.

The first time I heard the heart-dropping, stomach-churning, breath-stealing words, "you have cancer," I was 14 years old. The second time I heard them, I was 37.

The first time, a chronic ache in my shoulder turned out to be bone cancer. The second time, a chronic cough turned out to be metastatic lung cancer.

When I was a teenager undergoing chemotherapy for osteosarcoma, I never really thought I was going to die. Me and my teen cancer comrades in the hospital went through hell together. But I naïvely thought we would all get better and go home again one day.

I have seen cancer through an adolescent's eyes, and I have seen it through the eyes of a mom with three small children.

I was a busy mom, working, going to grad school, and raising our four-year-old son and two-year-old twin daughters. I was tired all the time, but who wouldn't be? And I had a string of chest colds that I just couldn't shake. Or maybe it was asthma. But a shelf full of asthma meds weren't improving my breathing. I stopped going upstairs to tuck my son in at night, too winded to read bedtime stories. I couldn't walk around carrying my little girls anymore; I could hardly walk across the room without panting. It wasn't asthma.

"Mama, I wish you didn't have cancer. It was nicer before you were sick."

I was 15 years old and in the hospital receiving chemo when the anti-nausea drug Zofran was FDA-approved in 1991. It was like the clouds had parted and I finally could see a ray of light through these wretched treatments. Prior to that, we had to take our chemo straight up. I spent my first several months of treatment vomiting all day long. Nothing stayed down, so I was sustained by IV nutrition. I roomed with another young cancer patient at the hospital, and she made it into a game; with each new spew, she would tell her mom to add that to the running tally on the whiteboard. Dark humor gets you through some rough times.

I have been cured of cancer, and I have been terminal.

The whole wing of the hospital was silent the afternoon Karen died. She had been in a coma for several days. At one point her hand moved and her little brother took it as a sign that she was waking up. But then she was gone. She wasn't even 15.

Karen was gone.
Cancer is deadly.
I might die.

It’s the first time mortality — my mortality — really sunk in to my 14-year-old mind.

Learning that I had cancer again seemed like some sort of cruel joke. I had already paid my dues, marched through hell, undergone several painful bone surgeries and been declared 'cured.' But it was different this time. This time it wasn't just about me. I had three beautiful little faces looking up at me, counting on me to be around to wipe their noses, kiss their scraped knees, hold their hands during their first heartbreak, and applaud as they received their diplomas. Each dream of the future was being wiped away with each new metastasis revealed on the scans.

Your spine, your shoulder blade, your hip, your liver.

I had kept in Christmas-card-contact with a few of my teen cancer friends. I used to ask after them at each annual checkup, "How's Rob? How's Linda?" But the answers were not always what I wanted to hear.

"Relapse."

"Decided not to continue treatment."

"Passed away just before Christmas."

I stopped asking after that. In those days, we didn't have online support groups, websites listing clinical trials or even iPads to pass the hours, days, weeks or months in the hospital. We had to check out the VCR in two-hour increments and the whole floor shared that one machine.

Now they can test a tumor and sometimes find the specific mutation driving the cancer. If you're one of the lucky ones, there is a pill to target that mutation. So far, I have been one of the lucky ones. But one day, my luck will run out.

My right arm was saved by a cutting-edge limb salvage procedure. My life is being extended by a brand new targeted therapy.

Then we were going for a cure. Now I have learned that 'cure' is not the only goal in cancer care. I have learned that it is possible for the some people to live with metastatic lung cancer as a chronic disease for months and sometimes years.

Cancer research is moving fast. Will it move fast enough to stay ahead of my cancer? I desperately hope so. There are three little people who are counting on it.




Originally posted at: www.curetoday.com/community/tori-tomalia/2015/05/the-changing-face-of-cancer-care

Lung Cancer Stigma

A few days ago there was a great article about the stigma surrounding lung cancer and the impact it has on patients. Check it out!

The lung cancer blame game


Also included in the article was a slide show with several people in the lung cancer club, including yours truly.

Slideshow: Faces of lung cancer


So enough with the blame already, let's work together and find a cure!

Lung Cancer HOPE Summit

Imagine a room filled with 150 people who have lung cancer, many of whom are stage 4. Do you envision wheelchairs and oxygen tanks? Frailty and sadness? Then, my friend, you clearly did not attend the 5^th Annual LUNGevity HOPE Summit in Washington DC this past weekend.

Every year, the LUNGevity Foundation hosts a weekend-long conference for lung cancer survivors and caregivers (you are a "survivor" the day you are diagnosed with cancer). In its first year, 17 survivors attended. This year, that number was 150. The weekend began with a welcome reception Friday night, where I finally got to meet the people who have become my online support community over the past two years. Saturday and Sunday consisted of sessions on topics of interest to people in the lung cancer community — nutrition, surgery, clinical trials, advocacy, and more. Saturday night's dinner was at a lovely outdoor restaurant called the Old Angler's Inn, which provided delicious food and drink as well as live music. We certainly felt pampered! I am very grateful to have received one of the travel grants that LUNGevity provides to help offset the travel and lodging fees. Without this, many of those in attendance would not have been able to come.

Here are my top three highlights of the weekend:


Chris Draft

Chris Draft is a former NFL player who lost his young wife Keasha to lung cancer in 2011. Chris and Keasha founded Team Draft, an organization dedicated to changing the face of lung cancer. Not only is Chris a dynamic and inspiring speaker, but he clearly knows his stuff when it comes to the latest developments in lung cancer research. Thank you, Chris, for all you and your foundation are doing to help those of us living with lung cancer.


John Poirier, PhD

"JT" is an assistant professor at Memorial Sloan Kettering Cancer Center and is one of the researchers on the front lines of making change for the lung cancer community. His passion and dedication to this work comes through clearly in how he speaks about it. In addition to discussing the specific developments that are happening in targeted therapies and immunotherapy, he noted how the rate of change in research has ramped up significantly, with new discoveries coming out at a pace never before seen in lung cancer research. This information explosion provides enormous hope for us.


The People

Without question, the best part of the weekend for me was meeting all of the survivors and their caregivers. Talking with these people, I felt like I was seeing old friends that I had known all my life. In the terrifying early days following my diagnosis, reading the blogs of other people living with lung cancer provided a lifeline that helped me find my way through the fear. To finally meet this group of people in person was both wonderful and surreal. It was luxurious to be able to sit and chat over a meal, and learn even more about these people who had inspired me so much. Click here for a list of their active lung cancer blogs.


Thank you to all the people at LUNGevity who made this weekend happen. I now feel even more connected to the lung cancer community than before. If you are interested in attending a HOPE summit, click here to find out more.

To continue the conversation about hope in lung cancer, join the Lung Cancer Social Media (LCSM) tweetchat at 8 p.m. EST on Thursday, May 7. For more information about the "Spreading Hope for Lung Cancer" tweetchat, visit this link. I hope to see you there!



Originally posted at: www.curetoday.com/community/tori-tomalia/2015/05/lung-cancer-hope-summit

Kickstarting a Dream

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

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

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

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

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

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

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

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

Here are the numbers (because I love numbers):

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

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

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

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

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

~ ~ ~ ~ ~

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

Shall We Play A Game?

(I was a kid in the 80s and thought that was one of the coolest movies I had ever seen.)




As my regular readers know, Jason and I have been working toward opening our dream business, Pointless Brewery & Theatre. We are in the middle of a super exciting and nerve-wracking fundraising campaign through Kickstarter. For those of you who aren't familiar with Kickstarter, it is a website that gives artists a platform to get the word out to a large audience about their project, and people can make donations (pledges) to help make this project come to life.

The awesome/terrifying thing about Kickstarter is that if you DON'T make your goal, you lose all the pledges.

Let me say that again...

You lose ALL THE MONEY.

So far we have raised over $37,000 and have more than 300 people from around the world supporting our project. All that love feels pretty amazing.

Here's the harsh part: we need to hit our $50,000 goal by April 20 or we will lose over $37,000. 

Yikes. Please don't let that happen. If you haven't watched our video and learned about our project yet, take a moment now to do so. It's worth it, I'll wait. Just click here: http://kck.st/1EEAQ08


Now comes the fun part, and why I quoted WarGames above.

Will you play a game with me? It's called the Pointless Challenge, and here is how it works:

1. Post a picture of something that makes life less pointless. 
2. Pledge to the Pointless Kickstarter campaign http://kck.st/1EEAQ08 
3. Tag 3 friends to do the same.

The picture can be anything that makes you smile, that makes you happy, that gives you that giddy-in-the-tummy feeling, that makes your soul sing. It can be complex, it can be simple.

So, will you join me? Share on your Facebook wall, post to Twitter. Invite your friends to take a moment out of life to remember what's important.
 

Living On Borrowed Time....

There is a constant clock ticking in my mind.

Tick...tick...tick....

"Living on borrowed time...."

I've passed my expiration date.

Tick...tick...tick....

The thing that scares me most, that threatens to tear me away from my family lives inside my body.

Tick...tick...tick....

One day my luck's gonna run out.

Tick...tick...tick....

Ya know what sucks? Having your future torn away from you when you were just digging into your career. When things were looking so bright. Awards rolling in, people taking notice.

When you have a house full of small children counting on you.

(They're still counting on me.)

So what do you do?

You dust yourself off, take stock of what you still CAN do, where you still CAN play an important role, what dreams you STILL dare to dream.

My cancer is well controlled right now.

Right now I have time.

Tick...tick...tick...

Right now I have time to plan for my family's future. To get things in place to take care of them when I'm gone.

(Did you know cancer is expensive?)

Life takes unexpected turns. You adjust. You make the best of it. You still dare to dream big.

This is the only life you get. Even if it is cut drastically short.

So you shift gears. And dream.

And ask for help.

You.

Yes, you sitting at your computer, looking at your phone. I'm talking to you.

You know all those times you have read my blog and asked yourself what you could do to help?

Now's your chance.

I. Need. Your. Help.

I need you to dig down and pledge to support this dream, to support my family, to give cancer the big middle finger.

Right now.

Take out your credit card and pledge.

Every one of you who has read my writings and been touched by me baring my soul as I faced the unimaginable (your word, not mine).

You can make a difference. You can help build a future for this family.

You can help create something that I will get to be a part of for the next months and (dare I hope) few years. Something to live beyond. A legacy.

Tick...tick...tick....

But we need you.

I need you.

Give.

Challenge your friends to give. Tell them why it matters.

Because sometimes life is super crappy and unfair and horrible. But you know what makes it bearable? The people. The people who pick you up when all is lost. The people who allow you to hope for better days. The people who give you the strength to dream.

The people like you.

Now's your chance.

Tick...tick...tick....

Click here. Watch. Give.

Finding Your Lung Cancer Community

In the months following my diagnosis with metastatic lung cancer, I felt so desperately lost and alone. I didn't know a single person with this type of cancer, let alone another young mom. As the fog of shock and denial gradually lifted, I ventured into the online waters of cancer groups in an attempt to find others in this same boat. First, I came across a number of blogs written by other young people with lung cancer, and I hung on every written word. Many of those same people have become dear friends to me now, and heartbreakingly some have been taken by this disease.

If you are newly diagnosed or looking to connect with other lung cancer folks, here are a few groups and organizations that have been very helpful to me in my journey, offering emotional support, companionship, up-to-date research information, and even suggestions for treatments to discuss with my doctor.


LUNGevity

LUNGevity is the largest lung cancer non-profit, and has funded over 100 research studies. They also provide patient support through online patient & caregiver forums, an active Facebook group, and the LifeLine program that matches people with similar diagnosis to become phone friends who can call on each other and offer guidence. For face-to-face support, they host Hope Summits throughout the country, where lung cancer survivors can meet in person, hear from experts in the field, and offer peer to peer support.

Why I'm Excited About LUNGevity: I am headed to my very first Hope Summit in May! I will finally get to meet so many of my lung cancer community face to face. There is still time to sign up if you want to come, too.


Bonnie J. Addario Lung Cancer Foundation

Founded by lung cancer survivor Bonnie J. Addario, this non-profit funds an enormous amount of lung cancer research, including the innovative Genomics of Young Lung Cancer study. This first-of-its-kind trial is focused on patients diagnosed with lung cancer under the age of 40, to investigate if there are certain mutations or other similarities within this population. The Lung Cancer Foundation also hosts the Lung Cancer Living Room, a once a month support group and information session that they stream live so that patients around the globe can participate.

Why I Love the Bonnie J. Addario Lung Cancer Foundation: This organization put me in touch with some of the top ROS1 (my driving mutation) researchers for a second opinion that provided insight, information, and hope about my disease.


CancerGRACE (Global Resource for Advancing Cancer Education)

CancerGRACE is a website and online forum where patients can go to discuss treatments, side effects, and new research with other patients and caregivers. What makes CancerGRACE different from other online chat groups is that it is moderated by oncologists. The organization also hosts in-person forums, the most recent being their Immunotherapy Patient Forum in October 2014. This conference featured experts in immunotherapy presenting research and answering patient questions. Videos of the lectures are available online. I attended the Acquired Resistance to EGFR/ALK/ROS1 Inhibitor Forum in September, and I was thrilled to see the top experts in this field discussing their research and answering questions from a room full of patients being kept alive by their discoveries. Remarkable stuff.

What Make CancerGRACE special: It is run by leaders in the field, so they are able to provide accurate, timely information to patients.


LCSM (Lung Cancer Social Media)

For the twitter-savvy folks, LCSM is just the thing for you. This is primarily a twitter-based group that communicates with the hashtag #LCSM, sharing research news, personal stories, and support. Every other Thursday they host a tweetchat focused on a specific lung cancer related topic, and spend one hour in a fast and fun discussion. LCSM also manages a website that includes lung cancer facts, transcripts of past tweetchats, and a list of lung cancer blogs, something that was vital in getting me through the early months following diagnosis. I love the immediacy of blogs, the way stories are told in the moment that they happen. Blogs tend to be more raw and honest that other writing, and I appreciate that immensely.

Why You Should Check Out LCSM: Strange as it may sound, I joined Twitter solely so that I could participate in the LCSM tweetchats. They are fun and informative, and there is a great sense of community around LCSM.


Do you know of other good cancer resources? Post them below!



Originally posted at: www.curetoday.com/community/tori-tomalia/2015/03/finding-your-lung-cancer-community

Pointless Brewery & Theatre to explore the intersection of brewing and improv

An interview with Mark Maynard, in which I discuss beer, cancer, Yes And, life choices, improv, and facing challenges head on.

Pointless Brewery & Theatre to explore the intersection of brewing and improv

Couple opening Pointless Brewery & Theatre in Ann Arbor

We got some nice press coverage for our dream project, Pointless Brewery & Theatre.

Don't let stage IV lung cancer keep you down!

Couple opening Pointless Brewery & Theatre in Ann Arbor



Want to join our Pointless endeavor? Pledge to our Kickstarter and enjoy lots of Pointless perks!

Birthdays Take On New Meaning

I did it! I turned 39!!

That may not sound like much of an accomplishment, but the horrible statistics that come with a metastatic lung cancer diagnosis had us all believing that even making it to 38 would be a stretch.

So how does one celebrate such a milestone? For me, with a lot of reflection. I've been given the gift of time, and while my SuperDrug is doing a bang-up job controlling my cancer right now, I know my future is uncertain. Over the past few months, our lung cancer community has endured some incredibly heavy losses. Sadly, losing friends is nothing new to me anymore, but this recent string of deaths hit me particularly hard because several of them were people that I was sure would be the one to beat the odds. Young, previously in great health, with so much to offer the world, and yet cancer stole them away so quickly.

Sobering thoughts.

I have a lung cancer friend who always tells me that he looks forward to seeing me dance at my children's weddings. And every time he says it, my eyes well up with tears because I dare to hope that it might be possible.

Some days I catch myself playing a dangerous game, where my mind wanders to "what if" scenarios. What if I had known, ten years ago, that this was in my cards for the future? Would I have still gotten married and had kids, knowing that I was going to be dropping them into a horrible situation? Or would I have done the noble thing and hidden myself away, to spare others from heartache? A parent's job is to protect their children from harm; would I have been strong enough to destroy all the joy they have given me to save them from pain?

 “I'm a grenade and at some point I'm going to blow up and I would like to minimize the casualties, okay?”

― John Green, The Fault in Our Stars

But, of course, I can't go back and change the past. All I can do is make the present memorable for them, and plant seeds for the future. One such seed is a wonderful/crazy dream that my husband and I have nurtured for close to a decade, the goal of opening a theatre together. With my lifespan greatly truncated, we decided that if there is ever a time to make it happen, the time was now. (You can watch a video and learn more about it here: http://kck.st/1EEAQ08)

So yes, I still dream big. I dream that I might see my 40^th birthday, I dream that I might plant more gardens, I dream that I might see more first snowfalls, I dream that I might guide my children through their adolescence. And some days I even dare to dream about dancing at their weddings.

But today … today I got to turn 39 years old, and that is a reason to celebrate. Happy birthday to me!



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/03/birthdays-take-on-new-meaning