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
Friday, October 14, 2016
Thursday, July 07, 2016
Listen for Zebras: A ROS1 Lung Cancer Story
There's an old saying in medicine, "When you hear hoof beats, think horses, not zebras." The logic behind the adage is that the common answer is usually the correct one. This is all well and good for the horses, but us zebras can sometimes get lost in the shuffle.
I have ROS1 lung cancer, meaning that my cancer is driven by a mutation in the ROS1 gene. There is an explosion of research currently underway, examining the genetic causes of cancer. ROS1 is rare, accounting for only about 1 to 2 percent of all lung cancers. In fact, it wasn’t until March of 2016 that a drug was FDA approved specifically for ROS1-positive lung cancer. Xalkori (crizotinib) is the drug that has been saving my life for over two years.
I went to a conference two years ago that focused on acquired resistance to targeted medicines. The afternoon sessions broke out by mutation type: EGFR, ALK and ROS1. Us zebras were tickled pink to see eight people with ROS1, since none of us had ever met another one before. "We better take a picture, I don't think there have ever been this many ROS1-ers in the same room!"
Since then, I have been on a quest to track down others with this rare mutation. Along the way, I met up with several others who were equally driven to form a connection and gather us zebras into a dazzle (really – that's the term for a group of zebras). It started as an informal series of text messages where we kept tacking on more people. At some point, one of us said it might be less unwieldy if we just formed a Facebook group. And so we did. This group has become a place for us to share our treatment journeys, discuss clinical trials, exchange advice on symptom management and pool our knowledge. As the months went on, and we told our doctors about the group, we realized what a wealth of information we had amassed.
It was then that the wheels started turning. There is a ton of exciting research happening in cancer these days, but being such a small group had us concerned that we would get overlooked. We are a rare breed, so zebras have to stick together.
Someone in the group suggested approaching the Bonnie J. Addario Lung Cancer Foundation asking if they would create a study just for us. It was a long shot, but we are a group of people with advanced cancer, so what did we have to lose by asking?
When you are in a situation like this, facing an absolutely terrifying and dire diagnosis and prognosis, it is very nice when someone is willing to listen to your concerns. It is even more heartening when they offer to help you. It is a lovely surprise when they take steps to support you. But it is exceedingly rare and wonderful when they actually put muscle and money behind a plan to help you reach your goals.
That is exactly what Bonnie J. Addario and her foundation did.
Over the past few months, a subset of our ROS1 group (which now numbers over 100 people from around the globe) have been participating in conference calls with the foundation to create connections with researchers, health care providers and other stakeholders to investigate this mutation and ultimately create a ROS1 repository that can serve to further research and treatments for our mutation.
You can read more about this incredible, patient-driven initiative on the Lung Cancer Foundation website: http://www.lungcancerfoundation.org/patients/ros1/
If you or someone you know has a ROS1 cancer, please follow this link the answer an online survey about your disease. This is an easy step to further the understanding of ROS1 cancer. http://www.lungcancerfoundation.org/patients/ros1/survey/
I am beyond excited to be part of this initiative, and am empowered to be part of a group of patients who are speaking up and being heard. Having metastatic lung cancer really sucks, but I have met some of the most amazing people because of it.
And really, who can overlook a dazzle of zebras?
Originally published at: http://www.curetoday.com/community/tori-tomalia/2016/07/listen-for-zebras-a-ros1-story
I have ROS1 lung cancer, meaning that my cancer is driven by a mutation in the ROS1 gene. There is an explosion of research currently underway, examining the genetic causes of cancer. ROS1 is rare, accounting for only about 1 to 2 percent of all lung cancers. In fact, it wasn’t until March of 2016 that a drug was FDA approved specifically for ROS1-positive lung cancer. Xalkori (crizotinib) is the drug that has been saving my life for over two years.
I went to a conference two years ago that focused on acquired resistance to targeted medicines. The afternoon sessions broke out by mutation type: EGFR, ALK and ROS1. Us zebras were tickled pink to see eight people with ROS1, since none of us had ever met another one before. "We better take a picture, I don't think there have ever been this many ROS1-ers in the same room!"
Since then, I have been on a quest to track down others with this rare mutation. Along the way, I met up with several others who were equally driven to form a connection and gather us zebras into a dazzle (really – that's the term for a group of zebras). It started as an informal series of text messages where we kept tacking on more people. At some point, one of us said it might be less unwieldy if we just formed a Facebook group. And so we did. This group has become a place for us to share our treatment journeys, discuss clinical trials, exchange advice on symptom management and pool our knowledge. As the months went on, and we told our doctors about the group, we realized what a wealth of information we had amassed.
It was then that the wheels started turning. There is a ton of exciting research happening in cancer these days, but being such a small group had us concerned that we would get overlooked. We are a rare breed, so zebras have to stick together.
Someone in the group suggested approaching the Bonnie J. Addario Lung Cancer Foundation asking if they would create a study just for us. It was a long shot, but we are a group of people with advanced cancer, so what did we have to lose by asking?
When you are in a situation like this, facing an absolutely terrifying and dire diagnosis and prognosis, it is very nice when someone is willing to listen to your concerns. It is even more heartening when they offer to help you. It is a lovely surprise when they take steps to support you. But it is exceedingly rare and wonderful when they actually put muscle and money behind a plan to help you reach your goals.
That is exactly what Bonnie J. Addario and her foundation did.
Over the past few months, a subset of our ROS1 group (which now numbers over 100 people from around the globe) have been participating in conference calls with the foundation to create connections with researchers, health care providers and other stakeholders to investigate this mutation and ultimately create a ROS1 repository that can serve to further research and treatments for our mutation.
You can read more about this incredible, patient-driven initiative on the Lung Cancer Foundation website: http://www.lungcancerfoundation.org/patients/ros1/
If you or someone you know has a ROS1 cancer, please follow this link the answer an online survey about your disease. This is an easy step to further the understanding of ROS1 cancer. http://www.lungcancerfoundation.org/patients/ros1/survey/
I am beyond excited to be part of this initiative, and am empowered to be part of a group of patients who are speaking up and being heard. Having metastatic lung cancer really sucks, but I have met some of the most amazing people because of it.
And really, who can overlook a dazzle of zebras?
Originally published at: http://www.curetoday.com/community/tori-tomalia/2016/07/listen-for-zebras-a-ros1-story
Thursday, June 02, 2016
How Much Do You Want To Know About Your Cancer?
I came across this NY Times article, "How Much Do You Want To Know About Your Cancer," and I was moved to comment. Apparently I had more to say than their character limit, so I thought I better blog about it! I'd love to hear other people's perspectives.
The article:
My response:
I am almost *exactly* the patient described in this article, with lung cancer spread throughout my bones and liver. My children, however, were only 4, 2 and 2 when I was diagnosed, and I was acutely ill by the time my doctors finally figured out it wasn't just asthma causing my intense breathing difficulties. This past weekend marked 3 years from that fateful day when I was told that I have cancer. Now, I take a targeted medicine daily to control my metastatic lung cancer. I have been through chemotherapy and brain radiation, but I am able to maintain a pretty good quality of life.
So what should you tell a patient in this situation? We need to know how very serious this is, but that there is always room for hope. We need to know that you, our doctors, will stay by our side and will keep trying to find treatments as long as we are game to keep submitting ourselves to the accompanying side effects. We want you to help us live in the precarious spot of preparing for end of life while simultaneously embracing today. We want you to guide us through the wonderfully daunting landscape of new treatments and clinical trials that are the beacon of hope for those of us living with terminal cancer. We want you to help us reframe what hope means when we run out of treatment options, and we struggle to find meaning in the remaining days.
We want you to bear in mind how absolutely overwhelming this news is. For me, it took several weeks for the fog of shock and despair to lift, before I could even begin to process the enormity of this news. Perhaps the best ways I have heard it told is that "we cannot cure you, but we will do everything we can to try and control the cancer." We need you to revisit this conversation time and time again, as our understanding evolves and our treatment path shifts and changes.
Tori Tomalia
Stage IV NSCLC, ROS1+
Friday, May 06, 2016
Brain Surgery Light v2.0
Having been through the halo version of SRS (stereotactic radiosurgery) and the fancy new frameless "Edge" technology, I definitely prefer the latter. This time, they didn't need to numb my head (which didn't regain full sensation for about 3 months), or puncture four spots around my head to anchor the frame (leaving bruising and swelling, plus paralyzing one eyebrow for about a month).
Instead, I was fitted with this snug little mask which they clamped into the machine. There were also cameras around the room which projected motion-sensor beams, similar to the kind you see in spy movies. If I moved more that 0.5 mm, the beams would break and the treatment would stop. This is how they are able to target a brain met that is only 5mm while causing minimal damage to the surrounding brain tissue. Amazing.
The whole thing only took around an hour, which included getting into the machine, the treatment, and a quick check in with my doctor afterward.
The mask was much less invasive than the halo, though I found it incredibly tight fitting, almost to the point of me thinking that if the treatment lasted much longer I would need to speak up. I kept reminding myself that I went through unmedicated childbirth, I can handle this. After the procedure I told my doctor about the painfulness of the mask, and he said that he has had two people complain about it, me and a small child. It seems that those of us who don't have a lot of padding have to put up with it basically pressing on bone. Yay.
See the marks it left all over me? That thing was ridiculously tight.
I got to keep the mask, and my kiddos enjoyed playing with it. Each wanted a turn wearing it and lying very still as they pretended to have brain radiation. The other two would pretend to be the robot arm of the machine that delivered the "laser beams" and the other would make the zapping noises. I love how kids process tough situations in such a literal play-acting way.
Now I am dealing with all the awesome steroid side effects - and thankfully I only have to take them for a few days. Hats off to my friends who have to be on them long-term. They are no fun at all, but they keep the brain from swelling which is, ya know, pretty important. So I've got the body aches, flushed cheeks, weird sleep challenges despite being really tired, and the stomach feeling where I can't tell if I'm ravenous or nauseated.
The post-SRS effects are primarily a headache (though not nearly as bad as last time), and fatigue, like feeling really exhausted kind of fatigue.
I will have another MRI in two months as follow up, and the plan is to keep going on Xalkori as long as possible. It has already worked longer than average (1.5 years is the median for ROS1; I have been on it for 2.5 years). In the metastatic cancer world, if something is working you don't want to jump ship too fast. There are a finite number of things that can keep this in check. If the brain mets come at this slow pace, one at a time every 6 months or so, the rad onc feels that it is safest to just keep spot zapping them as needed. If the pace changes, then we will have to look at other options. So, I just keep chugging along.
But ya know? It's not easy. So here's the straight dope.
This is hard. Living with terminal cancer is really, really hard. I think my little family handles it mind-bogglingly well, but don't let our semi-together appearance fool you into thinking this is easy. We have been lucky to have stretches of time where we can let cancer sit on the back burner for a while, but it is always there, always waiting to bubble over and demand attention again.
This is hard. Living with terminal cancer is really, really hard. I think my little family handles it mind-bogglingly well, but don't let our semi-together appearance fool you into thinking this is easy. We have been lucky to have stretches of time where we can let cancer sit on the back burner for a while, but it is always there, always waiting to bubble over and demand attention again.
Things that are hard while recovering from "brain surgery light":
- 2 screaming 5 year olds
- telling your kids during bedtime stories that no, I will not go downstairs and get you a glass of water. If you really need one, go down and pour a glass yourself. And then hearing a scream and "Mommy! I spilled water everywhere!" And realizing it would have been much easier to just go downstairs in the first place, but lying down felt oh-so-nice.
- cleaning up a 5 year old's poop accident
- feeling guilty as I wonder how many 7 year olds are expected to do the washing up after dinner because mom doesn't feel well
- comforting a screaming 5 year old who had a wipe out getting out of the bathtub and hit her head
- jumping out of bed in the middle of the night because you hear "Mommy, I'm gonna throw up!" (Fortunately, she didn't.)
- explaining to your kids that a beloved teacher has just died of cancer. "But Mommy, YOU have cancer!"
- After thanking your eldest for always stepping up and handling things so well when Mommy isn't feeling good, to hear him say, "I remember before you had cancer, Momma" and hoping he really does remember.
So many of those things are just typical life with small children, which any parent will tell you is not easy on a good day. Throw a major illness in there, and it is just really really hard.
And while I have become very adept at managing the host of fun side effects that come with my daily cancer treatment (my purse looks like a walking pharmacy) and I can give myself shots without batting an eye, it is a daily trudge. We hear so much "rah-rah-rah! Beat that cancer" rhetoric out there, but the story is totally different for the metastatic bunch. There is no end to this. I will be in treatment forever, well, until I die or decide I've had enough. Don't get me wrong, I am immensely grateful to be alive, but it is a strange reality. I remember on a form I had to fill out at the hospital one time, that asked if I ever had suicidal thoughts, and I laughed out loud. I actively choose not to die every day when take my pills. Those of us on this metastatic path are just hoping for a few more weeks, months, dare we hope years of this uncertain life. (I know suicide is nothing to laugh at, and my heart aches for people dealing with mental illness, but the absurdity of that question in that moment struck me as funny.)
So this is hard. Really hard. And I'll reiterate what I thought last time I went through SRS, that whoever said SRS is a breeze clearly didn't have 4 year old twins. They are 5 now, and it still wasn't much easier. Don't get me wrong, I know that this was MUCH easier than having a craniotomy, that Xalkori is much easier than chemo, and that there are much harder things coming for me down the road. But it is still really freakin' hard.
So this is hard. Really hard. And I'll reiterate what I thought last time I went through SRS, that whoever said SRS is a breeze clearly didn't have 4 year old twins. They are 5 now, and it still wasn't much easier. Don't get me wrong, I know that this was MUCH easier than having a craniotomy, that Xalkori is much easier than chemo, and that there are much harder things coming for me down the road. But it is still really freakin' hard.
And yet, this is the path I am on, and I desperately hope to keep walking this path for a long, long time. So it goes.
Thursday, April 28, 2016
Riding the SRS Train
Well, another little bugger showed up on my MRI. The good news is that it's small (5mm) and we caught it early so SRS (stereotactic radiosurgery) is a great option again. Also, the Xalkori is still working great on the rest of my body - I've been on it for 2.5 years, which is pretty remarkable.
I go in tomorrow for the planning session. The other upside is that the cancer center has a brand-spankin'-new machine which does NOT use the Frankensteinesque drills-into-your-skull frame. I'll get a better look at the fancy new tech tomorrow.
What a surreal thing this stage IV life is.
So, I'm back on the SRS train. Just hope it keeps on chugging along for a long time.
I go in tomorrow for the planning session. The other upside is that the cancer center has a brand-spankin'-new machine which does NOT use the Frankensteinesque drills-into-your-skull frame. I'll get a better look at the fancy new tech tomorrow.
What a surreal thing this stage IV life is.
So, I'm back on the SRS train. Just hope it keeps on chugging along for a long time.
Thursday, March 24, 2016
A Day I Never Expected to See With Metastatic Cancer
This weekend I celebrated a day I never expected to see – my fortieth birthday! It has been almost three years since that awful day when I found out that I had lung cancer that had spread throughout my body. In those days, I was so very sick and weak that I couldn't imagine living for another six months, let alone entering my 40s.
I decided it was a milestone I needed to celebrate BIG, but I also wanted to give something back to the community that has supported me and quite literally kept me alive this far. I decided to have an improv show at the theatre/brewery that my husband and I co-founded, and to give all the funds to cancer research. It was an amazing night. I told the story of my cancer journey, and our incredibly talented cast of improvisers took those ideas and themes and turned them into hilarious scenes that had the audience – myself included – laughing until our sides ached.
But, as it seems to happen with every joyful occasion on my life now, part of me kept wondering if this would be the last birthday I would see. I have no delusions about the path I'm on, and I am acutely aware of how insanely lucky I have been so far. I have become intricately connected with the lung cancer community, a group of people who have kept my sane throughout this awful rollercoaster ride. Unfortunately, I have learned how quickly the tide can turn and sometimes the person you were sure would beat the odds doesn't.
It's a delicate balance, this stage 4 life.
On the day I turned 40…
…"scanxiety" crept around the edges of my mind. My three-month scans were due the day before my birthday, but I requested to have them pushed back a week so that I could enjoy my celebration with a (relatively) calm mind.
On the day I turned 40…
…a fellow stage 4 boldly embraced her future and got married. Despite the uncertainly, she took the brave step into her future and decided to live!
On the day I turned 40…
…my lung cancer community mourned as a fellow stage 4 took his last breath. Treatment after treatment failed him, and despite seeking out specialists and clinical trials, the cancer moved too fast.
Birthdays are a time for looking back and looking forward and taking stock of where you have been and where you hope to go. At times like these, it is hard not to think about the daunting five-year survival statistics for metastatic lung cancer. These numbers have recently doubled – sounds great, right? But they doubled from 1 percent to 2 percent. As I approach my third anniversary of living with this disease, I can't help but wonder if the clock is ticking.
I try to find the balance, focusing on all the joys I have in my life now, and daring to let my mind wander into the future. I sure hope to blow out candles that read "41."
Originally published at: http://www.curetoday.com/community/tori-tomalia/2016/03/a-day-i-never-expected-to-see
I decided it was a milestone I needed to celebrate BIG, but I also wanted to give something back to the community that has supported me and quite literally kept me alive this far. I decided to have an improv show at the theatre/brewery that my husband and I co-founded, and to give all the funds to cancer research. It was an amazing night. I told the story of my cancer journey, and our incredibly talented cast of improvisers took those ideas and themes and turned them into hilarious scenes that had the audience – myself included – laughing until our sides ached.
But, as it seems to happen with every joyful occasion on my life now, part of me kept wondering if this would be the last birthday I would see. I have no delusions about the path I'm on, and I am acutely aware of how insanely lucky I have been so far. I have become intricately connected with the lung cancer community, a group of people who have kept my sane throughout this awful rollercoaster ride. Unfortunately, I have learned how quickly the tide can turn and sometimes the person you were sure would beat the odds doesn't.
It's a delicate balance, this stage 4 life.
On the day I turned 40…
…"scanxiety" crept around the edges of my mind. My three-month scans were due the day before my birthday, but I requested to have them pushed back a week so that I could enjoy my celebration with a (relatively) calm mind.
On the day I turned 40…
…a fellow stage 4 boldly embraced her future and got married. Despite the uncertainly, she took the brave step into her future and decided to live!
On the day I turned 40…
…my lung cancer community mourned as a fellow stage 4 took his last breath. Treatment after treatment failed him, and despite seeking out specialists and clinical trials, the cancer moved too fast.
Birthdays are a time for looking back and looking forward and taking stock of where you have been and where you hope to go. At times like these, it is hard not to think about the daunting five-year survival statistics for metastatic lung cancer. These numbers have recently doubled – sounds great, right? But they doubled from 1 percent to 2 percent. As I approach my third anniversary of living with this disease, I can't help but wonder if the clock is ticking.
I try to find the balance, focusing on all the joys I have in my life now, and daring to let my mind wander into the future. I sure hope to blow out candles that read "41."
Originally published at: http://www.curetoday.com/community/tori-tomalia/2016/03/a-day-i-never-expected-to-see
Wednesday, February 10, 2016
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.
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.