Home Home Home

I made it home Saturday afternoon and am now slowly rebuilding my strength surrounded by my beloved family.

The surgery went well and without complications. We won’t know for sure until we get the pathology report but the surgeon said the feel of the tumor led him to believe there is still live cancer in the section he removed, rather than all necrosis. So that’s a bummer, and may mean more targeted radiation to the area left behind. But we will cross that bridge when we come to it.

This was one of the scarier hills I have tackled over my 5+ years with metastatic cancer. There is an awful calculus that patients go through, deciding what we would be willing to give up for more time on earth. What deficits will we accept for more days? What makes life worth living? What risks will we accept for the hope of another year?

The amazing Jason stayed by my side at the hospital, sleeping (or attempting to sleep) in a non-reclining chair, which frankly doesn’t seem possible at all. But I dearly appreciated his company as I transitioned out of the weird post-surgery twilight into the early steps of recovery.

Now that I’m home, I’m totally focused on recovery. The main things are regaining my steadiness, balance, and coordination. There are subtle changes that I’m noticing, like how my handwriting looks different, though I am very pleased to see that I can still knit. Overall, I’m having to learn to move at turtle pace, rather than my preferred lighting speed. An interesting perspective shift which is probably a good life lesson. As always, I’m not sure why I have to find such hard ways to learn these lessons.

I am looking forward to tapering off these steroids and the messed up sleep and puffiness they bring.

Check out my amazing post-surgery hairdo! My Mum spent a solid hour soaking out the glue that had held the sensors in place, and which had dried into gooey, itchy chunks. She is staying with us for a bit and her help has been invaluable (far beyond just getting glue out of my hair).

The support from folks has been absolutely vital and humbling. The meals, the puzzle books, the well-wishes and prayers. All of these have allowed me to focus on healing, knowing I have a community pitching in to help! If you still want to sign up, I’ve added a few more meal requests to the Lotsa Helping Hands site. We are the “Tomalia Support Team” and our zip code is 48104.

five.

So here we are. Five years. When I was diagnosed with metastatic lung cancer, the statistics said that my chances of living to see this day were less than 1%.

This is a sobering anniversary; I can’t help but think of all my friends who ran out of time. People who seemed to be managing treatment so well and then .... well, we know how fast the snake can turn. Why have I been so freakishly lucky in this horribly unlucky disease?

I took a stroll down memory lane to see how I wrote about this day over the past 5 years.

• Four.
• How Much Do You Want To Know About Your Cancer? (third anniversary)
• Cancer as Rebirth (second anniversary)
• That Time of Year (first anniversary)
• The Plural of Apocalypse (diagnosis)
• And when we found out it was metastatic and incurable: The Time is Now

A cancer diagnosis inevitably leads to talk of a “bucket list.” I thought about this quite a bit when first diagnosed, but there wasn’t a whole lot that I hadn’t already done. I had been fortunate enough to travel internationally, live in several different places, experience all sort of wonderful adventures.

As I thought about mortality and time and what I wished for in this life, I realized that all I really wanted boiled down to three things.

1. See my kids grow up
2. Help Jason build our dream business
3. Cure my cancer

I still have a long way to go on the first one, but I feel so fortunate to have gotten as many years as I have. When I was diagnosed, my hope was to live long enough to see our son start kindergarten. Now we are discussing middle school options. Unbelievable. So very grateful.

#2 on the bucket list is coming along well! Pointless has been up and running for almost 2 and a half years, adding on an additional space for the Pointless School of Improv after the first year. We still have many ideas of how we want the business to grow and things we would like to do with it, but it has been amazing being part of this process. When I stood on the stage for my curtain speech on opening night, I confessed that I didn’t actually think I would live to see the doors open. But I did!

The third item is humongous and audacious, but hey, dream big right? I have been amazingly fortunate to cross paths with two amazing women (yeah, I'm talking about you Lisa and Janet) who share my rare mutation, and who also made the bold decision that we needed to drive our cancer care and the research toward making our disease manageable instead of terminal. The three of us sowed the seeds of the ROS1ders, and in partnership with the Addario Lung Cancer Foundation and many more wonderful ROS1ders have developed the Global ROS1 Initiative.

These three goals are what have driven all of my decisions for the past 5 years. How’s that for singularity of focus! I suppose it would have been easier to say “I want to go to the Grand Canyon,” but I never did do things the easy way. Just ask my parents.

-----

It has been a lot, taking stock of these past 5 years. Trying to enumerate what I have been through, what my body has been through ....

• 2 bronchoscopies
• 6 cycles of a 3 chemo agents
• 50 months of crizotinib
• 3 sessions of SRS
• 20 injections for bone mets
• 1 clinical trial
• 3 PET scans
• 3 bone scans
• 10 EKGs
• 17 brain MRIs
• 21 CT scans
• 1,826 days (knowingly) living with lung cancer, and all the effects and side effects of cancer treatments and procedures.

But who’s counting.

-----

Five years is a significant milestone that deserved a significant gesture.

So I got a tattoo! Something borne with pain which left me forever changed. Quite fitting.

Our daughter wrote this on the family calendar.

It was my first tattoo so I didn’t know what to expect, but the artist was very patient with me. Jason, the kiddos and I designed the image to honor the 5 of us surviving these past 5 years, with each of us represented by our favorite color.

It didn’t hurt much, though I had a moment that morning where I thought to myself, “wait - why am I going to get poked by needles ON PURPOSE?”

I watched the tattoo artist do all the black outlining, then when he switched to colors he said he would start with the darkest one first. “That’s yours, Jason!” I said as I looked over at him.

Then all of a sudden, the past 5 years hit me, and tears ran down my face. I started thinking about all that Jason has had to deal with, always waiting for the next shoe to drop, always ready to take over when I feel unwell, always, always, always....

It had no idea that getting the tattoo would make me so emotional. As a friend said, “It is momentous for a reason.”

-----

We marked this anniversary with bowling, a tradition we started when I was first diagnosed, when I was too weak to actually bowl, but could sit and watch and be present with the family. I had been told to "make memories" for my children, so I did it in any way I could.

Strike dance!

Strike hug!

We had cake, because every special occasion deserves cake. There was only one image fitting such a momentous day.

My dear friend Meriah commissioned artist Jermaine Dickerson to create this family portrait for us, not long after I was diagnosed.

The 5 of us

We each ate our own head!

So here we are, five years. I never expected to see this milestone. And yet I cannot help but hope I will see more. I'm already dreaming about that next tattoo . . . .

Four.

Four years ago today I was diagnosed with lung cancer. We wouldn't find our for several days just how bad it was. This time four years ago I was still under the false impression that the cancer was contained in my left lung, that I would be facing chemo and the removal of my lung. That we would be aiming for a cure.

We wouldn't know for several days that it had spread to the other lung, to my spine, my hip, my shoulder blade, my ribs, and my liver. We didn't know yet that the cancer was incurable. We hadn't yet thought of the word "terminal."

The statistics for Stage IV lung cancer are sobering. According to the American Cancer Society, the 5 year survival rate for metastatic lung cancer is 1%. The Lung Cancer Association cites more optimistic figures at 4%.

We had a big, heartbreaking loss in the lung cancer community yesterday. The red headed unicorn, the force of nature, the woman who inspired so many of us, Kim Ringen died yesterday, just a few days short of her 4 year cancerversary. It's hard to celebrate mine when I know she and so many others will not.

So today I'm trying to turn the sadness into thankfulness. We spent the weekend putting in our backyard vegetable garden, and with each turn of the soil I thought about how lucky I am to be able to dig in the dirt, to plant and nurture new life. I try to accept that I need to pace myself, even though my physical limitations frustrate me (as Zander put it, "Mama, you take A LOT of breaks).

Kiddos hard at work

The Garden

I remind myself how much sicker I was four years ago at this time, when I would gasp for air after taking more than a few steps, when I was too weak to stand in the shower, when even a conversation would leave me short of breath.

I remember all this, I think of all the friends who I have lost, and I remember how very lucky I am to be here four years later.

10 Tips for Coping with Scanxiety

I have my every-three-month scans coming up on Friday, and I am already a nervous wreck. The week or so leading up to my scans I, like clockwork, come down with a nasty case of PSS: Pre-Scan Syndrome. It mimics all the emotional symptoms of PMS, with irritability, heightened emotions and general crabbiness, and lasts through when I get my scan results.

I don’t think scanxiety ever goes away, but as I've gone through more of these I have developed some tricks for trying to deal with the nerves. Here is a list of things that sometimes work for me.


1. Distraction

Binge watch episodes of your favorite TV show. Dig into a great book and get lost in the story. Go somewhere fun that you have never been before. Treat yourself to something that will keep your mind busy thinking about anything but those scan results.


2. Loud Music

Crank up the radio! Blast 80s music! Belt show tunes! It's hard think about scans while reenacting scenes from Flashdance, and I challenge you to feel anxious while singing "Don't Stop Believin'." Trust me, this is some magical stress relief. The science behind it probably has something to do with endorphins, but I am too busy right now rockin' out to "Pour Some Sugar on Me" to care.


3. Acknowledge It

When scan time is coming near, I feel like I need to wear a sign around my neck warning people that I am not responsible for the words that come out of my mouth. I get short with people and am likely to snap at them for no particular reason. Acknowledging what I am feeling and why can help to make it more manageable for myself and those around me.


4. Make Plans for the Worst Case Scenario

While I always hope to get great news, I find that sometimes I can lessen the panic by knowing what the plan will be if the scans are bad. Cancer makes you feel powerless and at the mercy of the disease. Having a plan in place can give back some of that lost feeling of control.


5. Spend Time with a Child

I've written before about the incredible ability that small children have to live in the moment. For them, all that matters is what's happening right now: this game of Go Fish, these orange slices, this third reading of The Very Hungry Caterpillar. Spend the afternoon with a little one and the worries will drift away for a few hours.


6. Pretend You Already Got Good Results

This is totally delusional, but sometimes I can trick myself into imagining that – hey, I already got the results, and they were great! Sure, it only lasts for a few seconds, but those few seconds are a lovely relief from the anxiety.


7. Know When and How You Will Get Your Results

My oncologist only gives the results in person, so I know I will not hear anything until our appointment on Tuesday. For me, knowing this is a relief (although waiting the weekend is a bit of a challenge!), so I don’t sit by the phone all weekend wondering if I am going to get a call. Discuss with your doctor how you will find out the results so that you don't have the extra layer of anxiety, wondering when you will hear.


8. Help Someone Else Out

Sometimes, the best way to relieve your own stress is to help out someone else who is struggling. Help a neighbor, talk to a friend in need, shift the focus off of yourself for a while. It can be refreshing to worry about someone else for a change.


9. Meditate

There are many different strategies for calming the mind, such as deep breathing, praying, positive visualization and physical relaxation strategies. And if those don’t work….


10. Medicate

Let's be frank, depression and anxiety are cancer's annoying younger siblings who tag along and show up at the most inconvenient times. There is no shame in discussing these issues with your doctor and considering taking medication to help.


So, what about you? What are your best strategies for dealing with the dreaded scanxiety?




Originally posted at: www.curetoday.com/community/tori-tomalia/2015/02/10-tips-for-coping-with-scanxiety

Parenting with a Chronic Illness

My daughter shared her cold with me (thanks, Miks) and when you mix a simple cold with a "chronic disease" like metastatic lung cancer, well it pretty much knocks me out. I've spent most of the day lying on the couch. After I picked up Zander from school, I immediately lay back down on the couch without taking off my coat or anything.

Zander froze and stared at me lying on the couch and then said,

"It makes me feel like your cancer is growing again."

I reminded him that I just had scans and the cancer is so small they can barely see it.

"I know, but it makes me nervous to see you sick."

He was only 4-turning-5 when I was diagnosed and SUPER sick, and he says he doesn't really remember those days, but I think on some level it has stayed with him.

Sigh.

Also, my apologies that I have neglected this lovely blog for so long. Things are good with my health, the latest MRI showed that the SRS worked super well, so the plan is to keep chugging along with Xalkori and if anything else pops up we will zap it again. All of my creative energy has been going toward getting our Pointless Brewery & Theatre up and running. Things are going super well there, and it has been SO MUCH FUN! A wise person said to me that, in addition to the fulfillment of a dream, this business is a kind of self-care for me, a way to envision the future in a way that is less painful and uncertain than my own future. I think she is correct.

Day 9: Andy Trahan, survivor. "If you have lungs, you're at risk for lung cancer."

Lung Cancer Awareness Month 2015
Day 9: Andy Trahan, survivor
"If you have lungs, you're at risk for lung cancer."

A 35 year old father of 3, husband, and stage 4 lung cancer survivor. Diagnosed 2-14-13

Andy has been involved in advocacy by speaking to Representatives and Senators to share his story. Along with LCA he helped convince them to sign the bill for Low-Dose CT as a screening option. He and his wife, Leslie, also got a lung cancer specialty license plate in their state of Louisiana. He occasionally connects with other survivors that need support. His dad does a lot of research and connects with other survivors too and his sister created a Facebook page “Andy’s Team.” His brother has helped Andy with his work when he’s not up to doing it himself. Everyone has come together and has a role in the family to support Andy.

...continue reading...

Day 2: Deana Hendrickson, advocate. "Smoker, former smoker, never smoker: no one deserves lung cancer. #NoStigma"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 2: Deana Hendrickson, Lung Cancer Advocate
Co-founder of #LCSM Chat (Lung Cancer Social Media) on Twitter
Twitter handle: @LungCancerFaces

What is her connection with lung cancer?

Deana’s mother, Rita Stein, was diagnosed with stage 3b lung cancer in June 2012. During Rita’s treatment (concurrent chemo and radiation for 6 weeks) Deana found herself spending a great deal of time in waiting rooms, infusion centers, and unfortunately, her mother’s hospital room. In order to pass the time, Deana began to post lung cancer awareness messages on Twitter, which led to “meeting” other advocates, patients, and physicians on social media. When Deana’s mother died in April 2013, she continued her advocacy, in part, to help her heal from the terrible ordeal of losing her NED (no evidence of disease) mother to treatment complications.

Deana helped found #LCSM Chat (Lung Cancer Social Media) on Twitter, and does whatever she can to raise money and awareness, mixed with a little bit of outrage, on behalf of lung cancer patients and their families. As Deana says, “My mom survived the Holocaust, living in a DP (refugee) camp for two years, and the death of my dad after 53 years of marriage. She never backed down from a challenge. In her honor and memory, neither will I.”

...continue reading...

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?

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.

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

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

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!

How Cancer Changed Me as a Parent

My amazing little girls just turned four, and I was thrilled to share this milestone with them. There was a time not long ago when I doubted I would see this day.

When I was diagnosed with metastatic lung cancer in the spring of 2013, my son was 4 and my twin girls were newly 2. My daughters were still sleeping in cribs, still and diapers, still my little babies.

That summer my worldview shifted dramatically, and my view of my children growing up followed suit. Now, I no longer mourn the passing days of their childhood. Like many parents, I used to have a twinge of sadness when the little ones passed milestones, knowing that they were one day closer to growing up and leaving home. Now, instead of sadness I feel a twinge of relief and a boatload of joy, for each one is another moment that I am still here to experience. It is as if the faster they grow, the more of their lives I will get to see. As if they could only grow fast enough, they might outpace my cancer.

I was still here to see my girls learn to ride tricycles – and ride they did! First days of school, first time on the bus, first time at a movie theatre, graduating to a big kid bed, getting rid of cribs, learning to use the potty, learning to jump, learning to read, learning to write. All these are achievements not only for my kids, but for our whole family. Because we got to see each of these as a whole family.

I look at my son and I see the baby face disappearing before my eyes, and glimpses of the young man he will become peek out at me.

I see the feisty sprit of my little girl, and her focus and determination resonate in my soul; it’s the same fire that burns in me. Looking in her eyes is looking in a mirror, and I dream of the woman she will one day be.

I snuggle with my daughter, and feel her little fingers gripping mine. Her breathing shifts, her grip loosens, and she drifts off to sleep. These tiny remnants of babyhood surface and fade away.

These fleeting moments….

I remember one day when the girls were infants and Jason and I were ridiculously sleep deprived (like all twin parents) and going a little crazy (like all twin parents). I said to Jason, "Can you imagine if we had an unplanned pregnancy? That is the WORST thing that could happen to this family." He stopped and stared at me. "I can think of much worse things than an unplanned pregnancy that could happen to our family." Oh yeah, perspective. He is so good at that. Who would have guessed that a much worse thing was waiting in the wings?

I think about my young friends whose dreams of having babies have been cut short by cancer. I think of the young children whose futures have been erased by disease. I think of all the moms and dads with cancer who have left this world, leaving small children to grow up without them.

I think of all this, and I celebrate my children growing up. Because I am so proud of the people they are becoming. Because they bring me so much joy. Because I am here to experience it.




Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/03/how-cancer-changed-me-as-a-parent

Empowered Patients Change National Cancer Guidelines

I have metastatic lung cancer. Conventional wisdom says that once cancer has spread beyond the original site, cure is impossible and the purpose of treatment is to reduce symptoms and extend the patient's life. Surgery is off the table.

Except.

Except what if the cancer has only just started to spread? What if it has only set up a few metastases (called oligometastatic disease)? Could you push the envelope and try the impossible, to cure stage 4 lung cancer?

A group of patients believed that this idea was worth fighting for.

It started with lung cancer patient Chris Newman's participation in an online patient forum, Inspire.com, where she learned about quite a few stage 4 patients with a small number of metastases who had undergone surgery or SBRT (Stereotactic Body Radiation Therapy, a kind of radiation that pinpoints small tumors). These patients had enjoyed No Evidence of Disease for years. They were lucky to have been treated at top medical institutions by doctors who were willing to think beyond the dire prognosis that comes with stage 4 lung cancer. On the flip side, there were many patients on the forum who said their doctors would only treat stage 4 with chemo, regardless of the number of metastases.

Chris realized that if the guidelines could be changed to allow surgery or SBRT for more situations, more metastatic patients might be offered these treatment options. She made the bold decision to approach the National Comprehensive Cancer Network (NCCN) and propose that they change their guidelines. At worst, she thought, the panel will have a good laugh. But the idea snowballed, and a group of lung cancer patients who knew each other through Inspire formed the Independent Lung Cancer Patient Advocates (ILCPA), and they went to work. They pooled their knowledge, connected with lung cancer non-profits, and attended the American Society of Clinical Oncology conference to solicit physician support and bring even more muscle to the fight.

Fueled by passion, cutting-edge research, and Twizzlers, the team spent endless hours poring over research, compiling journal articles and a developing a proposal to change the lives of people who had been told that aggressive treatment and cure were not an option; people who had a prognosis of a year, maybe two to live.

Fate stepped in. Chris found herself sitting next to an NCCN panel member, Dr. Frederick Grannis, at a lung cancer advocacy conference. He was kind enough to review the proposal and make sure that every member of the panel got a copy of her Addendum Arguments and that the proposal received serious consideration at the panel's meeting.

I've read the complete proposal, and it is pretty brilliant.


Here are some highlights:

"The life expectancy for Stage IV NSCLC patients is only around 8 to 12 months and 5-year survival rate between 1% and 5%. While a significant portion of clinicians react to the dismal prognosis of this group of patients with therapeutic nihilism or restrict their recommendations to those found only in existing guidelines, the issue of the most appropriate treatment approach is a very personal and subjective one for the patients, who find themselves face to face with their own mortality. Treatment plans for Stage IV NSCLC patients involve personal life/death/quality of life decisions. The patient should have the ultimate right to decide optimal balance of risk, benefit and quality of life, etc., when reviewing possible treatment options with their clinician. They are deprived of this right when they are not presented with ‘all’ reasonably appropriate treatment options."

…and…

"Stage IV NSCLC patients with oligometastatic disease often are not offered, or even made aware of, the option of aggressive local treatment which may provide long term survival, or even curative benefits, by their clinicians, as current guidelines do not explicitly address this issue, despite persuasive and compelling advances".

… and then, they bring it all together…

"Therefore, given the grim prognosis for this subset of patients, possibly life extending and/or curative treatment options should be addressed in the treatment guidelines algorithms in ‘all’ instances where there is NCCN consensus that the intervention is appropriate".


So guess what…

They did it!


As of January 1, 2015, the National Comprehensive Cancer Network guidelines now include information that could dramatically change the lives of stage 4 lung cancer patients with oligometastatic disease.

And all because a group of patients raised their voices together and demanded to be heard.

On behalf of lung cancer patients everywhere, I offer my enormous gratitude to the patients, caregivers, lung cancer advocacy groups, and clinicians who supported this effort:

Chris Newman, Janet Freeman-Daily, George Haughton, Michele Taylor, Robert Young (RIP), Annika Holm, Shane Piers, Addario Lung Cancer Medical Institute, Bonnie J. Addario Lung Cancer Foundation, LUNGevity, Lung Cancer Circle of Hope, LUNGCAN (a collaborative group of 18 lung cancer advocacy organizations), David P. Carbone, MD, PhD, Joe Y. Chang, MD, PhD, Abraham Chachoua,, MD, Maria Teresa Congedo, MD, Raja M. Flores, MD, Gregory N. Gan, MD, PhD, Corey J. Langer, MD, FACP, Michael T. Milano, MD, PhD, Paul Okunieff , MD, Kenneth Rosenzweig, MD, Joseph K. Salama, MD, Alice Tsang Shaw, MD, PhD, Roman Perez-Soler, MD, Tokujiro Yano, MD


For more on this story, see "How A Group Of Lung Cancer Survivors Got Doctors To Listen" at NPR.org.

Visit the NCCN website to read the complete guidelines.



Originally posted at: www.curetoday.com/community/tori-tomalia/2015/03/empowered-patients-change-national-cancer-guidelines