I saw my surgeon on Monday and all systems are go for brain surgery on Thursday, October 4.
I’m oscillating between being incredibly nervous and remarkably calm.
Acute recovery will be anywhere from 2-5 days in the hospital, and he estimates 4-8 weeks of slowly rebuilding my strength. His calm demeanor is buoying my optimism; he kept saying this is straight forward and he doesn’t anticipate any problems.
In the mean time, we have been trying to get everything ready at home, for the family, the kiddos, the business. I’ve been feeling a very literal need to get my house in order to prepare for this event. As a fairly behind-the-scenes person, I feel like most of what I do is make sure things keep moving smoothly - like a player in curling, rushing about sweeping a clear path for that granite stone to get where it needs to be.
As the surgery nears and my to-do list gets shorter, the primary thing I need to do is hand over the reins to all the trusted members of my team. A strange and liberating feeling.
Many heartfelt thanks to all the people who have reached out to offer help, meals, prayers, and well wishes. My friend Meriah is organizing all of this through Lotsa Helping Hands, so if you would like to join the “Tomalia Support Team” to learn about practical ways you could help, visit the website and you can learn more (our zip code is 48104).
I will happily accept any thoughts and prayers for strength to me and my family, and for my surgeon to have steady hands and a clear mind on Thursday!
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Tuesday, October 02, 2018
Friday, October 14, 2016
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
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
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.
Wednesday, July 08, 2015
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
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
Wednesday, June 24, 2015
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
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
Friday, April 10, 2015
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:
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.
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:
- Post a picture of something that makes life less pointless.
- Pledge to the Pointless Kickstarter campaign http://kck.st/1EEAQ08
- 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.
Tuesday, March 31, 2015
Living On Borrowed Time....
There is a constant clock ticking in my mind.
"Living on borrowed time...."
I've passed my expiration date.
The thing that scares me most, that threatens to tear me away from my family lives inside my body.
One day my luck's gonna run out.
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.
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.
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.
Click here. Watch. Give.
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.
Wednesday, March 25, 2015
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
Pointless Brewery & Theatre to explore the intersection of brewing and improv
Tuesday, February 10, 2015
A Personal Take on Personalized Medicine
There has been a lot of talk lately about the personalized medicine revolution and President Obama's initiative to fund precision medicine. We hear about genetic sequencing and analyzing DNA, but what does all of this mean to a cancer patient?
Sit back while I tell you a little story….
In May of 2013 I was diagnosed with stage 4 non-small cell lung cancer at the age of 37. No idea why. Since it had already spread from my lung throughout my body, surgery was not an option. Cue the devastation, the panic, the shock.
The plan of action was chemotherapy, and while the side effects were far from fun, I was relieved that at least it was working, and my giant tumor (seriously, it wrapped all around my left lung) was shrinking. I could breathe a little easier . . . literally. But a body can only tolerate harsh chemo for so long before the side effects become too damaging to the other organs. So, what do to next? The cancer was smaller, but not gone, and we needed another treatment to keep the cancer from taking over my body.
It was then that we sent a piece of my tumor to be tested for a rare genetic mutation, called ROS1. On Halloween day, I opened my email and saw a note from my oncologist.
Good news, you tested positive for ROS1.
Tears streamed down my face as I read this. "Good news" was quite an understatement.
Now, you may be wondering why I was HAPPY to find out that I had a mutation. Isn't that something out of a horror film? Doesn't that mean my kids will inherit this?
Actually, no. A tumor has its own DNA that is different from that of the person who has cancer. I like to think of it as a parasite living in the host's body. There are some mutations that are passed through generations, but many tumors arise out of random mistakes that happen in regular, everyday cell division.
My cancer is a nasty patch of weeds that has invaded my carefully tended garden.
This pest starts in one spot, and if you don't cut it out of there quickly, it spreads to other places. If it goes unchecked, it will crowd out and suffocate all the flowers and veggies.
If you can't cut it all out (with wide surgical margins), you can try dousing it with industrial strength Weed Killer. This stuff is powerful and often does a great job on the weeds, but as my dad learned after spraying it liberally all over the yard, it does a lot of collateral damage on the others things that you want growing there. We had a polka dotted lawn all summer. (Hi Dad!)
Traditionally, oncologists have used Broccoli Weed Killer on Weeds-of-the-Broccoli, Tomato Weed Killer on Weeds-of-the-Tomatoes, and so on. In recent years, however, scientists have started to take very detailed analyses of these various strains of weeds, and have sometimes been able to find what is driving their growth. The fascinating thing is that at times, Weeds-of-the-Cauliflower turn out to be caused by the same problem as Weeds-of-the-Green-Beans.
With this newfound knowledge, these scientists are in the process of developing a whole new method for eliminating this scourge on your garden. Rather than using Weed Killer, which causes some damage to all of the other plants, they have found that sometimes they can stop these weeds in their tracks by targeting their drive to grow. These targeted medicines whisper to the weeds, "You don't want to grow anymore. Retreat." The rest of the garden goes on blooming happily in the sun while the weeds shrink back.
For me, my twice daily Xalkori has been playing this Jedi mind trick on my cancer for over a year. It is almost certain, however, that one day my cancer will learn to ignore it. At that point, we will take another biopsy to see if we can figure out why my cancer is no longer susceptible to this super drug. At that point, I will try another targeted medicine which I hope speaks the same language as the weeds in my garden.
For me, precision medicine is highly personal, and I am counting on it to extend my life for months and years to come.
Originally posted at: www.curetoday.com/community/tori-tomalia/2015/02/a-personal-take-on-personalized-medicine
Sit back while I tell you a little story….
In May of 2013 I was diagnosed with stage 4 non-small cell lung cancer at the age of 37. No idea why. Since it had already spread from my lung throughout my body, surgery was not an option. Cue the devastation, the panic, the shock.
The plan of action was chemotherapy, and while the side effects were far from fun, I was relieved that at least it was working, and my giant tumor (seriously, it wrapped all around my left lung) was shrinking. I could breathe a little easier . . . literally. But a body can only tolerate harsh chemo for so long before the side effects become too damaging to the other organs. So, what do to next? The cancer was smaller, but not gone, and we needed another treatment to keep the cancer from taking over my body.
It was then that we sent a piece of my tumor to be tested for a rare genetic mutation, called ROS1. On Halloween day, I opened my email and saw a note from my oncologist.
Good news, you tested positive for ROS1.
Tears streamed down my face as I read this. "Good news" was quite an understatement.
Now, you may be wondering why I was HAPPY to find out that I had a mutation. Isn't that something out of a horror film? Doesn't that mean my kids will inherit this?
Actually, no. A tumor has its own DNA that is different from that of the person who has cancer. I like to think of it as a parasite living in the host's body. There are some mutations that are passed through generations, but many tumors arise out of random mistakes that happen in regular, everyday cell division.
My cancer is a nasty patch of weeds that has invaded my carefully tended garden.
This pest starts in one spot, and if you don't cut it out of there quickly, it spreads to other places. If it goes unchecked, it will crowd out and suffocate all the flowers and veggies.
If you can't cut it all out (with wide surgical margins), you can try dousing it with industrial strength Weed Killer. This stuff is powerful and often does a great job on the weeds, but as my dad learned after spraying it liberally all over the yard, it does a lot of collateral damage on the others things that you want growing there. We had a polka dotted lawn all summer. (Hi Dad!)
Traditionally, oncologists have used Broccoli Weed Killer on Weeds-of-the-Broccoli, Tomato Weed Killer on Weeds-of-the-Tomatoes, and so on. In recent years, however, scientists have started to take very detailed analyses of these various strains of weeds, and have sometimes been able to find what is driving their growth. The fascinating thing is that at times, Weeds-of-the-Cauliflower turn out to be caused by the same problem as Weeds-of-the-Green-Beans.
With this newfound knowledge, these scientists are in the process of developing a whole new method for eliminating this scourge on your garden. Rather than using Weed Killer, which causes some damage to all of the other plants, they have found that sometimes they can stop these weeds in their tracks by targeting their drive to grow. These targeted medicines whisper to the weeds, "You don't want to grow anymore. Retreat." The rest of the garden goes on blooming happily in the sun while the weeds shrink back.
For me, my twice daily Xalkori has been playing this Jedi mind trick on my cancer for over a year. It is almost certain, however, that one day my cancer will learn to ignore it. At that point, we will take another biopsy to see if we can figure out why my cancer is no longer susceptible to this super drug. At that point, I will try another targeted medicine which I hope speaks the same language as the weeds in my garden.
For me, precision medicine is highly personal, and I am counting on it to extend my life for months and years to come.
Originally posted at: www.curetoday.com/community/tori-tomalia/2015/02/a-personal-take-on-personalized-medicine
Wednesday, January 28, 2015
Don't Just Put On a Happy Face
WANTED: Someone who will let me speak my mind about this terrible disease, without having to be brave or positive or sun-shiny. Someone who will let me blow off steam and rant, someone who will let me feel negative and speak my fears about what lies ahead.I may get some static for this post, but I think that there is too much pressure on cancer patients to stay upbeat and cheerful all the time, dancing through treatments and smiling during scans. "You can beat cancer with a positive attitude!" Bah, if only that were true, I wouldn't have lost so many friends to cancer. On the contrary, it is perfectly natural – even healthy – to allow yourself to imagine various possibilities of what could be. If you have ever watched children play, you would notice that they act out "scary" scenarios as a way of understanding the world. Virginia Koste tells a powerful story in her book Dramatic Play in Childhood: Rehearsal for Life, about two children pretending to drown in a swimming pool. Their mother was alarmed at first, wondering why they would play at something so terrifying. She came to realize that by acting this out, they were diffusing their fear, and working through what they would do in that situation.
DESPERATELY SEEKING: Someone who will let me say that I am scared about what might be. That this disease freaks the crap out of me. Someone who will let me not be tough for a few minutes, but break down and cry about my anxieties.
Few adults play-act these kind of scenarios as expressively as children, but we still run through them in our minds. How many times have you mentally rehearsed a difficult conversation before having it? How often have you played out "what if" scenarios in your mind? We instinctively know that these rehearsals help us feel ready to deal with challenging situations.
I understand the impetus from well-meaning friends who interrupt with "don’t say that, just stay positive!" when you talk about fears of what may come to pass in your cancer treatment, but they don't seem to understand that speaking about these anxieties is a means of release. The patient ends up feeling like she has to act happy and fine all the time, and stifles the desperate need to talk through all of this. Unfortunately, oftentimes caregivers feel the same responsibility to put on a happy face around their loved one with cancer, lest they bring him down or pierce the bubble of positivity. It ends up becoming a farce-like scenario you might read in a "Missed Connections" ad, where both people are looking for the same thing and don't realize that it is right in front of them.
As I mentioned in "Dedicated to the Caregivers" I have a phenomenal caregiver for a husband. And while he is often the one who brings me up when I'm feeling blue, I cherish the conversations we have where we let each other know how f---ing terrifying this is. In fact, one of my favorite memories happened a few months after my diagnosis, when it had finally all sunk in. By this time, we had cried rivers of tears and we were starting to accept our new cancer landscape, coming to grips with how totally bizarre and surreal our lives were now. We were talking with a friend about my diagnosis, and the friend said,
"But they caught it early right?"
"…No, no they didn't."
"But they can treat it and you'll be okay, right?"
"…No, no it's actually pretty bad."
Of course, this goes far beyond cancer. How often do we hide what truly bothers us, pushing aside what we really want to say or do because we are afraid of how others will react. I say, go for it! Speak about it. Be bold. You may find that you are less alone than you think, and you can laugh together rather than crying alone.
Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/dont-just-put-on-a-happy-face
Tuesday, January 13, 2015
Cancer: the World's Worst Houseguest
You are sitting down to a nice dinner when you hear a knock on the door. That's strange, I wasn't expecting anyone. You open the door a crack to see who it is. He shoves the door all the way open and barges in.
It's Cancer, the World's Worst Houseguest.
He walks right past you and leaves muddy footprints all over your carpet. You are in shock. You didn't know there was any chance of him coming over. It was the last thing on your mind, but here he is, lounging on your couch like he owns the place. Who is this? What is he doing here?
Once the shock wears off, you try to talk to him. How long will he be staying? Why did he pick you? He just shrugs, rolls over and goes to sleep, snoring loudly.
You start to question yourself. If only you hadn't left the porch light on, maybe he would have gone right past your house. The neighbors whisper that you never should have bought that welcome mat. And the charming walkway lined with flowers just encouraged him.
The visit drags on and on. The days turn into weeks, and before you know it he has been there for months destroying your house and turning your life upside-down. You are exhausted because he wakes you up at all hours of the night. He walks around in slippers and thick socks, saying that your floors hurt his tender feet. He has puked on the carpet and clogged up the shower drain with his constantly shedding hair. He alternately eats everything in sight and complains that your food tastes weird. You notice that a few friends have stopped coming over, and you know that it is because they can't stand being around this guy. You can hardly blame them; you don't want him here either.
However, you also discover that you have an amazing community that offers to bring meals, help out around the house, and even drive your nasty houseguest all over town to his various appointments.
As time goes on, you meet other people who have experienced this terrible houseguest. Yeah, the same thing happened to me. He showed up totally unannounced and made me adjust my whole life to accommodate him. You discover that you now have membership in a club that no one wants to join, and soon you are swapping tips with others. When he kept complaining that my food tasted funny, I got rid of the metal cutlery and started serving it with plastic. He said it tasted much better! You find that together you can even laugh at his bizarre quirks.
After a while you start to get used to him hanging around, but you never forget that he is there. When you are feeling relaxed and happy, you hear him run to the bathroom. Your quiet book and cup of tea are interrupted by his hacking cough from the next room. He is always present.
Finally, after a seemingly endless string months, you kick him out of the house. You celebrate your freedom, but even then you find yourself checking the closets, peeking into dark shadows to see if he might be hiding somewhere. You think you hear him following you late at night. And every few months you get a message from him. He's considering stopping by again for a visit, but he's not sure. You peek out the window and think you catch a glimpse of him turning the corner.
One thing is certain: your life is never the same again after you receive a visit from the World's Worst Houseguest.
Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/cancer-the-worlds-worst-houseguest
It's Cancer, the World's Worst Houseguest.
He walks right past you and leaves muddy footprints all over your carpet. You are in shock. You didn't know there was any chance of him coming over. It was the last thing on your mind, but here he is, lounging on your couch like he owns the place. Who is this? What is he doing here?
Once the shock wears off, you try to talk to him. How long will he be staying? Why did he pick you? He just shrugs, rolls over and goes to sleep, snoring loudly.
You start to question yourself. If only you hadn't left the porch light on, maybe he would have gone right past your house. The neighbors whisper that you never should have bought that welcome mat. And the charming walkway lined with flowers just encouraged him.
The visit drags on and on. The days turn into weeks, and before you know it he has been there for months destroying your house and turning your life upside-down. You are exhausted because he wakes you up at all hours of the night. He walks around in slippers and thick socks, saying that your floors hurt his tender feet. He has puked on the carpet and clogged up the shower drain with his constantly shedding hair. He alternately eats everything in sight and complains that your food tastes weird. You notice that a few friends have stopped coming over, and you know that it is because they can't stand being around this guy. You can hardly blame them; you don't want him here either.
However, you also discover that you have an amazing community that offers to bring meals, help out around the house, and even drive your nasty houseguest all over town to his various appointments.
As time goes on, you meet other people who have experienced this terrible houseguest. Yeah, the same thing happened to me. He showed up totally unannounced and made me adjust my whole life to accommodate him. You discover that you now have membership in a club that no one wants to join, and soon you are swapping tips with others. When he kept complaining that my food tasted funny, I got rid of the metal cutlery and started serving it with plastic. He said it tasted much better! You find that together you can even laugh at his bizarre quirks.
After a while you start to get used to him hanging around, but you never forget that he is there. When you are feeling relaxed and happy, you hear him run to the bathroom. Your quiet book and cup of tea are interrupted by his hacking cough from the next room. He is always present.
Finally, after a seemingly endless string months, you kick him out of the house. You celebrate your freedom, but even then you find yourself checking the closets, peeking into dark shadows to see if he might be hiding somewhere. You think you hear him following you late at night. And every few months you get a message from him. He's considering stopping by again for a visit, but he's not sure. You peek out the window and think you catch a glimpse of him turning the corner.
One thing is certain: your life is never the same again after you receive a visit from the World's Worst Houseguest.
Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/cancer-the-worlds-worst-houseguest
Monday, December 22, 2014
Recipe for Living with Metastatic Cancer
Some of these ingredients may seem hard to find, especially if you are newly diagnosed. But with a little searching (and soul searching), you can create something wonderful to sustain yourself through the hard times.
The first cup includes your close circle: spouse, parents, family, friends, relatives, neighbors, coworkers, religious groups, community groups. These people are all around you, and are the first to jump in. Since too much support can spoil the recipe, it helps to use a website like Lotsa Helping Hands, or an organized friend to coordinate your support.
The second cup is your cancer people. It begins with the medical staff, such as your doctors, nurses and social workers. I have found it enormously helpful to include the support of other people with cancer, because they know what I am going through both emotionally and physically and can serve as emotional and practical guides navigating these waters. Explore online groups and organizations as well as in-person support such as The Cancer Support Community, a national organization that provides online support as well as local chapters. Remember that there is also support for your caregiver and children, if you have them, in the form of caregiver support groups and child life specialists for young ones.
The third cup is money. Cancer is expensive, and even if you have good insurance, the co-pays plus the lost work can add up quickly. Consider allowing friends to do a local fundraiser or an online campaign. Many people with advanced cancer also qualify for Social Security Disability, so speak to your hospital social worker about this.
Remember, support is vital to having this recipe work out, so don't skimp on this ingredient because you are scared or ashamed to ask for help.
It is the courage to ask questions of your doctor, the courage to advocate for yourself if you feel that you are not getting the care and response you need. It is the courage to admit that you need help. It is the courage to go for a second opinion. It is the courage to discuss end-of-life issues and wishes. It is the courage to tell those closest to you about what you are facing, your worries, your dreams and your nightmares. It takes courage to admit that you don't feel positive all the time. Admit the fear, speak of the terror, stop being strong. Then, when you are ready, find the courage to keep moving forward.
When diagnosed with cancer, we are thrown into an entirely new landscape, and knowledge can give back some of the feeling of control that cancer tears away. Knowledge helps you know what expect, how to plan for what could go wrong, what the Plan B will be if/when this treatment stops working. With knowledge you can learn about clinical trials that may prove promising (even potentially lifesaving) for your particular case. You can find this knowledge from online cancer communities of others with your disease, from staying abreast of the latest research, from pressing your doctors for more information, and from talking to others professionals in the field.
Sometimes the intensity of a stage 4 diagnosis can be simply overwhelming. I have found that I can't spend all my time focused on my dire prognosis. Sometimes, I just need to forget about it, try to forget that cancer exists, forget this thing living inside of me. So go ahead, splash in some denial – and if you're having one of those days, pour in the whole bottle. I won't tell.
Never underestimate the power of hope. In the darkest times, it can provide a single ray of light that keeps you moving forward. It could be the hope that you make it into a clinical trial, or that this next treatment buys you some more time, or that you will make it to the next birthday, or that you might just be the outlier that blows the statistics out of the water.
Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/recipe-for-living-with-metastatic-cancer
- First, you will need three heaping cups of support.
The first cup includes your close circle: spouse, parents, family, friends, relatives, neighbors, coworkers, religious groups, community groups. These people are all around you, and are the first to jump in. Since too much support can spoil the recipe, it helps to use a website like Lotsa Helping Hands, or an organized friend to coordinate your support.
The second cup is your cancer people. It begins with the medical staff, such as your doctors, nurses and social workers. I have found it enormously helpful to include the support of other people with cancer, because they know what I am going through both emotionally and physically and can serve as emotional and practical guides navigating these waters. Explore online groups and organizations as well as in-person support such as The Cancer Support Community, a national organization that provides online support as well as local chapters. Remember that there is also support for your caregiver and children, if you have them, in the form of caregiver support groups and child life specialists for young ones.
The third cup is money. Cancer is expensive, and even if you have good insurance, the co-pays plus the lost work can add up quickly. Consider allowing friends to do a local fundraiser or an online campaign. Many people with advanced cancer also qualify for Social Security Disability, so speak to your hospital social worker about this.
Remember, support is vital to having this recipe work out, so don't skimp on this ingredient because you are scared or ashamed to ask for help.
- Next, throw in two large handfuls of courage.
It is the courage to ask questions of your doctor, the courage to advocate for yourself if you feel that you are not getting the care and response you need. It is the courage to admit that you need help. It is the courage to go for a second opinion. It is the courage to discuss end-of-life issues and wishes. It is the courage to tell those closest to you about what you are facing, your worries, your dreams and your nightmares. It takes courage to admit that you don't feel positive all the time. Admit the fear, speak of the terror, stop being strong. Then, when you are ready, find the courage to keep moving forward.
- Melt and stir in a stick of knowledge, so that it spreads evenly throughout the mixture.
When diagnosed with cancer, we are thrown into an entirely new landscape, and knowledge can give back some of the feeling of control that cancer tears away. Knowledge helps you know what expect, how to plan for what could go wrong, what the Plan B will be if/when this treatment stops working. With knowledge you can learn about clinical trials that may prove promising (even potentially lifesaving) for your particular case. You can find this knowledge from online cancer communities of others with your disease, from staying abreast of the latest research, from pressing your doctors for more information, and from talking to others professionals in the field.
- Throw in a dash of denial.
Sometimes the intensity of a stage 4 diagnosis can be simply overwhelming. I have found that I can't spend all my time focused on my dire prognosis. Sometimes, I just need to forget about it, try to forget that cancer exists, forget this thing living inside of me. So go ahead, splash in some denial – and if you're having one of those days, pour in the whole bottle. I won't tell.
- Finally, cover the whole thing with a generous dusting of hope.
Never underestimate the power of hope. In the darkest times, it can provide a single ray of light that keeps you moving forward. It could be the hope that you make it into a clinical trial, or that this next treatment buys you some more time, or that you will make it to the next birthday, or that you might just be the outlier that blows the statistics out of the water.
~~~
Of course, there is no one recipe that works for everyone. These are the things that have helped me navigate the emotional minefield of this disease. What about you? What ingredients do you put in your mix?Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/recipe-for-living-with-metastatic-cancer
Tuesday, December 16, 2014
Live in the Moment: A Lesson From Cancer. And Preschoolers.
Having stage 4, incurable, metastatic, terminal lung cancer (or "eventually terminal" as my cancer buddy says) has made me acutely aware of death in a way I never expected to be at age 38.
I walk in the land of the living with the oppressive knowledge of how very close we all are to the land of the dead.
I know that right now my cancer is under control, but one day this roller coaster will dip down again. Will it come back up or will it be the final plunge?
People ask me how I cope, knowing how very uncertain my future is. Learning to cope has been a gradual, ongoing process. First was the shock, a frozen inability to process this new reality. Then there was the grief, the acknowledgement of my lost future, all the things I had just assumed that I would get to do and see. The plans that I had laid crumbled beneath my feet. But I realized that I couldn't stay in that mental space. I felt like I was wasting the time I had left here by focusing on my lost path.
So I stopped looking down that road. I started doing what all the self-help gurus tell you. I grabbed onto the old cliché and focused on "living in the moment." It is liberating and bizarre. And I get strange jolts when I remember that most people don't live like this.
I'll look back on this when I'm 80 and I'll laugh about it!
This will make a great story to tell my grandkids!
I avoid thinking about my own future in any concrete terms. I can think in a general sense about the future of the world, how things might be one day. But to think about my family five years from now sends a pang through my heart.
In five years, our little boy will be 11 and in middle school. Will he still have his heart-achingly gentle outlook on the world? Will he still be the kind soul who once explained to me, the reason Oscar the Grouch is so unhappy is because he lives in a garbage can. How can he sleep? The poor creature is miserable, no wonder he is rude.
In five years the twin girls will be 8. There will be no baby talk left in them. The terrifying sounding "pinado" will become a simple "piano," and the aptly named "hungerburgers" will be plain old "hamburgers."
Those 3-year-olds have the concept of living in the moment down to a marvelous, frustrating science. When prancing around the house like Elsa and Anna, nothing else in the world matters.
"It's time to get dressed and go to preschool."
"But we're dancing!!!"
Really, what matters more than the joy of spinning around in fairy wings and a cape? Being around small children forces you to stay in the present moment. The runny noses and sore tummies are so grounded in reality and immediacy that there is little room left for worry about futures that may or may not be.
Isn't part of growing up focusing on the future? Be an adult. Plan for tomorrow. Think ahead. Prepare for the rainy day. How are you supposed to do that when you KNOW that your future holds a typhoon? If you focus on the storm, your today will be washed away. Who knows how long any one of us has? In my case, I most likely know what is going to be the cause of my death. Does that make it different?
So I avoid thinking about the future. At least most of the time.
It's a tricky balance. I am a mom, so a big part of my job is preparing my kids for the future. How do I prepare them for a future that may not include me?
Originally posted at: www.curetoday.com/community/tori-tomalia/2014/12/live-in-the-moment-a-lesson-from-cancer-and-preschoolers
I walk in the land of the living with the oppressive knowledge of how very close we all are to the land of the dead.
I know that right now my cancer is under control, but one day this roller coaster will dip down again. Will it come back up or will it be the final plunge?
~~~
People ask me how I cope, knowing how very uncertain my future is. Learning to cope has been a gradual, ongoing process. First was the shock, a frozen inability to process this new reality. Then there was the grief, the acknowledgement of my lost future, all the things I had just assumed that I would get to do and see. The plans that I had laid crumbled beneath my feet. But I realized that I couldn't stay in that mental space. I felt like I was wasting the time I had left here by focusing on my lost path.
So I stopped looking down that road. I started doing what all the self-help gurus tell you. I grabbed onto the old cliché and focused on "living in the moment." It is liberating and bizarre. And I get strange jolts when I remember that most people don't live like this.
I'll look back on this when I'm 80 and I'll laugh about it!
This will make a great story to tell my grandkids!
I avoid thinking about my own future in any concrete terms. I can think in a general sense about the future of the world, how things might be one day. But to think about my family five years from now sends a pang through my heart.
In five years, our little boy will be 11 and in middle school. Will he still have his heart-achingly gentle outlook on the world? Will he still be the kind soul who once explained to me, the reason Oscar the Grouch is so unhappy is because he lives in a garbage can. How can he sleep? The poor creature is miserable, no wonder he is rude.
In five years the twin girls will be 8. There will be no baby talk left in them. The terrifying sounding "pinado" will become a simple "piano," and the aptly named "hungerburgers" will be plain old "hamburgers."
Those 3-year-olds have the concept of living in the moment down to a marvelous, frustrating science. When prancing around the house like Elsa and Anna, nothing else in the world matters.
"It's time to get dressed and go to preschool."
"But we're dancing!!!"
Really, what matters more than the joy of spinning around in fairy wings and a cape? Being around small children forces you to stay in the present moment. The runny noses and sore tummies are so grounded in reality and immediacy that there is little room left for worry about futures that may or may not be.
~~~
Isn't part of growing up focusing on the future? Be an adult. Plan for tomorrow. Think ahead. Prepare for the rainy day. How are you supposed to do that when you KNOW that your future holds a typhoon? If you focus on the storm, your today will be washed away. Who knows how long any one of us has? In my case, I most likely know what is going to be the cause of my death. Does that make it different?
So I avoid thinking about the future. At least most of the time.
It's a tricky balance. I am a mom, so a big part of my job is preparing my kids for the future. How do I prepare them for a future that may not include me?
Originally posted at: www.curetoday.com/community/tori-tomalia/2014/12/live-in-the-moment-a-lesson-from-cancer-and-preschoolers
Friday, December 12, 2014
The "Why Me" of Cancer
Cancer?!?
This can't be happening.
What did I do to deserve this?
Am I being Punked?
Is this my fault?
This isn't real.
Why me?
This can't be happening.
What did I do to deserve this?
Am I being Punked?
Is this my fault?
This isn't real.
Why me?
Cancer. The Big C. The malady that once was only spoken about in whispers. The Voldemort of diseases. With so much fear surrounding this diagnosis, is it any wonder we end up asking, "Why me?"
Why does a 14 year old vegetarian get bone cancer?
Why does a 37 year old non-smoking mom of three little ones get lung cancer?
Why would both patients be the same person?
~~~
When I was diagnosed with lung cancer, the first person we contacted (after my parents) was my pediatric oncologist. Could this be a very delayed recurrence of my osteosarcoma? Was this caused by treatment for my first cancer? Is there something about ME that explains how I got two cancers before the age of 40?
A biopsy answered the first question. No, this was adenocarcinoma of the lung. A totally different cancer than my childhood osteosarcoma.
My pediatric oncologist confirmed that this does not appear to be a late effect of prior treatment. Survivors of childhood cancers do face a slightly increased risk of subsequent cancers, based on what treatments were used for their first. However, the chemotherapy agents I had increased my odds of getting leukemia (very slightly). Lung cancer is nowhere on the list.
The third question was a bit trickier. She told me that I needed to get tested for Li-Fraumeni Syndrome, a rare genetic condition that makes a person highly prone to developing any number of cancers. The most worrying part about this is that I have three children. If I tested positive, each one of them would have a 50 percent chance of inheriting the syndrome.
How's that for maternal guilt?
Fast forward through CT scans, PET scans, a second bronchoscopy, genetic counseling, and sending DNA samples to be tested for Li-Fraumeni.
The bad news: the lung cancer had spread throughout my bones and into my liver. Metastatic. Stage IV. Incurable.
The good news: I do not have Li-Fraumeni. So, as far as they can tell, the second cancer is not part of a syndrome that my kids could inherit.
Those are some pretty heavy scales. But they tip in favor of the good.
That brings us back to the why.
The diagnosis of lung cancer carries with it a great deal of blame. There is the sometimes-spoken-usually-thought question that lung cancer patients face: did you smoke? While it is certainly true that some lung cancers are caused by smoking, 10 to 15 percent of people diagnosed have never smoked (like me), and another 40 percent have quit and were living smoke-free. Also keep in mind that the older folks started smoking when it was the norm (seriously, even doctors promoted smoking back then). Sadly, lung cancer kills more people than any other cancer – more than breast, prostate, and colon cancers combined. Despite this, lung cancer research receives a fraction of the federal funding of other cancers. And it boils down to blame.
~~~
Why me? Why did I get cancer?
Well, it must be because you smoked. No?
Well, then it must be caused by previous treatment. No?
Well, then it must be caused by a genetic condition. No?
Well, then it must be caused by lifestyle choices. No?
Well, then it must be caused by second hand smoke. No?
Well, then it must be caused by radon. No?
Well, then it must be caused by pollution. No?
Well, then it must be because you prayed to the wrong god.
Well, then it must be some sort of cosmic joke.
Well, then it must be punishment for mistakes in a past life.
Because it must be YOUR FAULT.
I don’t think people follow this line of thinking to be cruel (most of the time), but rather to distance themselves from the illness. I didn't do X, therefore I could never get Y. I'm safe and can carry on without worry.
Every day we make choices about how we live. Did you choose the salad or the steak? Did you ride your bike or drive? Did you sleep a full eight hours? Did you meditate? Did you exercise?
Of course we should make healthy lifestyle choices. But we are all human, wonderfully beautifully flawed human beings. And sometimes even when you make all the "right" decisions, life has other plans.
~~~
So, why me?
Why me?
. . .
Why does it matter?
So, why me?
Why me?
. . .
Why does it matter?
What about you? Have you had a "why me" journey? I welcome you to share your story in the comments.
Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/the-why-me-of-cancer
Wednesday, December 03, 2014
Blogging for CURE
In an exciting turn of events, I've started blogging for the cancer publication CURE. They publish both a magazine and web content, and I am looking forward to sharing my story with a new audience in the hopes of educating and helping more people who are on a cancer journey. CURE provides Cancer Updates Research & Education to patients, caregivers, and people working in the field of oncology. The magazine has recently brought on several bloggers in an effort to give readers a more personal side of the patient experience. I'm very happy to be one of them.
I'm still figuring out how I will coordinate blogging in two places, but I think I'll have some posts that are just for you, my awesome readers, and some that are for a larger cancer community on CURE, but I will provide a link to those here on my blog.
Full disclosure: CURE pays me a few pennies (literally) for each person who clicks on my articles. So, if you would be so kind, take a moment and click on my post below. And if you enjoy the read, please pass it along to your friends.
The first several posts on CURE will be catching those readers up on my cancer experience so far. My initial post (below) deals with the terror of the first few weeks after diagnosis. I welcome any feedback you have, either here on my blog or on the comments section over at CURE.
Knowledge is Power: A Cancer Patient Navigates Her Diagnosis
Edited - some people were having trouble with that link on certain browsers. If it doesn't show, try it here:
Knowledge is Power: A Cancer Patient Navigates Her Diagnosis
**Housekeeping note**
Some people have asked how to know when there are updates on this blog. If you are reading on a desktop, look over to the upper right hand side for the "follow by email" box. Just put your email address in there and click submit.
If you are reading on a mobile device, scroll down to the bottom and you will find the "follow by email" box. Put your email in there, click submit, and you are all set.
I'm still figuring out how I will coordinate blogging in two places, but I think I'll have some posts that are just for you, my awesome readers, and some that are for a larger cancer community on CURE, but I will provide a link to those here on my blog.
Full disclosure: CURE pays me a few pennies (literally) for each person who clicks on my articles. So, if you would be so kind, take a moment and click on my post below. And if you enjoy the read, please pass it along to your friends.
The first several posts on CURE will be catching those readers up on my cancer experience so far. My initial post (below) deals with the terror of the first few weeks after diagnosis. I welcome any feedback you have, either here on my blog or on the comments section over at CURE.
Knowledge is Power: A Cancer Patient Navigates Her Diagnosis
Edited - some people were having trouble with that link on certain browsers. If it doesn't show, try it here:
Knowledge is Power: A Cancer Patient Navigates Her Diagnosis
**Housekeeping note**
Some people have asked how to know when there are updates on this blog. If you are reading on a desktop, look over to the upper right hand side for the "follow by email" box. Just put your email address in there and click submit.
If you are reading on a mobile device, scroll down to the bottom and you will find the "follow by email" box. Put your email in there, click submit, and you are all set.
Friday, November 07, 2014
Quiz: What Do You Know About Cancer?
It is one of the most feared diseases, but what do you really know?
Tuesday, September 02, 2014
6 Easy Ways You Can Help Stop Lung Cancer
I am alive because of research.
This may sound like hyperbole, but when I think back to how very sick I was by the time they finally figured out what was going on, it is not hard to believe. It was only once the chemo started working that I was able to walk around and talk without getting short of breath. When we found my ROS1 mutation, I was able to go on the brand-spankin'-new drug Xalkori. This incredible leap of science is able to specifically target the mutation, and it has gotten me to NED. How freaking amazing is that?!?
Noticeably absent from this chart is lung cancer, the #1 cancer killer. Below is another version of the graph, modified to include lung cancer.
I'm so glad you asked. I have assembled an activism smorgasbord for just that reason.
Paint your toe nails purple and email a photo of your purple toes to purpletoes@lungcancerfoundation.org, then tweet and facebook it with #purpletoes. You can get your purple nail polish right from the Lung Cancer Foundation for a $25 donation. Click here for more information.
There is already a lot of buzz building on social media about this event, with the hashtag #IStandUpFor.
It's quick and it's easy. Who doesn't love easy advocacy?
This weekend I will be in Boston attending the Acquired Resistance Patient Forum, hearing from several of the rockstar docs who are doing the research that is saving my life. I'm really excited to hear what they have to say, plus I will get to meet a bunch of my fellow lung cancer folks in person! I can't wait to get a photo of a room full of people with stage IV lung cancer, who are living well because of targeted meds. Keep that research funding coming!
Now, don't think that I'm disregarding all the prayers, good vibes, chanting, and more that people have been sending my way. I'm sure all your love and support has played a role in how well I am doing right now. But you know how that old story goes, about the drowned man who went to heaven and yelled at God,
This may sound like hyperbole, but when I think back to how very sick I was by the time they finally figured out what was going on, it is not hard to believe. It was only once the chemo started working that I was able to walk around and talk without getting short of breath. When we found my ROS1 mutation, I was able to go on the brand-spankin'-new drug Xalkori. This incredible leap of science is able to specifically target the mutation, and it has gotten me to NED. How freaking amazing is that?!?
Sadly, lung cancer research receives very little funding. In the wake of the impressive IceBucketChallenge, several articles have come out addressing the disparity of funding for diseases. The image below, from "The Diseases We Donate To Aren't Always The Diseases That Kill Us," shows that while breast cancer (pink circle) and prostate cancer (orange circle) are very popular places to donate, the number of deaths caused by these illnesses is relatively small (see the corresponding dots on the right side). Both are nasty diseases and I personally know many who are suffering from or have died from them. What this chart says to me is that we are great at donating to these two causes, and both are now benefiting and have achieved high cure rates.
Noticeably absent from this chart is lung cancer, the #1 cancer killer. Below is another version of the graph, modified to include lung cancer.
See the tiny white dot at the bottom on the left? Compare that to the white circle on the right. Lung cancer causes more deaths than colon, breast and pancreatic cancers combined. Lung cancer in non-smokers is the #6 cancer killer in the US, and it is on the rise in young women.
So, when I hear about the cuts in research finding it is not just upsetting, it is terrifying. Without advances in research, I would be dead. There is currently another drug in trials - a new and improved Xalkori - that is in the wings for when Xalkori stops working for me. Support for research is vital for me, it the truest sense of the word.
"But what can I do about this?"
I'm so glad you asked. I have assembled an activism smorgasbord for just that reason.
1. For those who like pampering themselves:
 |
| The girls and I did this a few months ago |
2. For those who like to get political:
The American Lung Association is hosting the Lung Cancer Call-In Day on Thursday, September 4th to ask congress to increase research funding. All you have to do to participate is call your congressperson on Thursday during regular business hours.
"But I can't remember who my congressperson is!"That's okay, you can look it up easily right here. All you need is your zip code.
"But I'll never remember to call on Thursday!"Click here to request a reminder email to be sent to you Thursday morning. They are making this so easy!
"But I've never called a politician before. I'm nervous!"That's okay, it's going to be my first time calling my congressman, too. Let's all come back here to the comments section of this post after we do it and post what it was like. We can debrief together!
3. For those who like mingling with the stars:
Stand Up To Cancer is hosting "the biggest television event of the year" on Friday, September 5th at 8/7 central. And as a flip of the old call-in-to-donate method, in this program the stars will call YOU!
"Paltrow and Joel Gallen of Tenth Planet Productions will co-executive produce the Sept. 5 broadcast, live from the Dolby Theatre in Los Angeles. ABC, CBS, FOX and NBC, along with ABC Family, American Forces Network, Bravo, Cooking Channel, Discovery Fit & Health, E!, Encore, Encore Espanol, EPIX, ESPNEWS, FOX Sports 2, FXM, HBO, HBO Latino, ION Television, LMN, Logo TV, MLB Network, National Geographic Channel, Oxygen, Palladia, Pivot, SHOWTIME, Smithsonian Channel, Starz, TNT and VH1 are donating one hour of simultaneous commercial-free primetime for the nationally televised fundraising special on Friday, September 5, to be broadcast live from the Dolby Theatre in Los Angeles. The show will stream live on both Hulu and Yahoo."
There is already a lot of buzz building on social media about this event, with the hashtag #IStandUpFor.
 |
| Katie Couric favorited a tweet about me! |
4. For those who have a bunch of cash burning a hole in their pocket:
There are several excellent lung cancer organizations that will generously help you extinguish the flames by accepting that cash!
- Bonnie J. Addario Lung Cancer Foundation
- Dusty Joy Foundation
- Lung Cancer Alliance
- LUNGevity Foundation
5. For those who have just a little bit of cash burning a hole in their ... phone:
Text LUNG to 27722 to make a $10 donation to the Lung Cancer Alliance.
It's quick and it's easy. Who doesn't love easy advocacy?
6. For those who like doing silly stuff and putting their mug on social media:
"But wait a second, aren't you just jumping on ALS's IceBucket bandwagon?"Actually, no. The IceBucketChallenge, in its current incarnation, was started by another lung cancer family to raise funds and awareness for lung cancer. I don't want to take anything away from ALS; it's a terrible disease and deserves its share of the pie, too. But we are trying to bring some attention back to where it started, with lung cancer, but in a new way. Plus I got to introduce my kids to a whole new food group. Who knew food could be sprayed out of a can?
~~~~~
This weekend I will be in Boston attending the Acquired Resistance Patient Forum, hearing from several of the rockstar docs who are doing the research that is saving my life. I'm really excited to hear what they have to say, plus I will get to meet a bunch of my fellow lung cancer folks in person! I can't wait to get a photo of a room full of people with stage IV lung cancer, who are living well because of targeted meds. Keep that research funding coming!
Now, don't think that I'm disregarding all the prayers, good vibes, chanting, and more that people have been sending my way. I'm sure all your love and support has played a role in how well I am doing right now. But you know how that old story goes, about the drowned man who went to heaven and yelled at God,
"I prayed! Why didn't you help me?"God replies,
"I tried! I sent a log, and then a branch, and then a boat...."
Take a look through the activism buffet above and see if there is something in there that appeals to you. If not, share this with a friend. Sadly, many of us know someone touched by lung cancer. Let's help turn this death sentence into a life sentence.
Sunday, April 06, 2014
The Other C Word
This weekend I saw an excellent production of To Kill a Mockingbird (seriously, if you live in the greater Ypsilanti/Ann Arbor area, run, don't walk to get tickets).
It was full of beautiful, powerful moments, but Atticus' lines about courage really jumped out to me and have been bouncing around in my mind ever since he spoke them. He explains that courage is
I've often been told how brave I am in this cancer journey (and in my first). That has never made much sense to me, as I'm not doing any of this by choice. I would much rather NOT have cancer, and NOT put my family through all of this. Sure, great life lessons, live in the moment, blah blah blah, but I would really prefer not to have cancer at all. Really. REALLY. Really really for real.
I am, however, surrounded by some very courageous people. Perhaps the most astounding and least acknowledged are the caregivers, the partners, the spouses. They voluntarily attend countless appointments, put up with scanxiety, hold the patient's hand while awaiting daunting test results, and take care of rambunctious munchkins when the patient needs to sleep. (That last one might be specific to me.) None of this is required; it is not their bodies that are resentful hosts to this beast, yet they do it willingly. That is courage.
The other group who knowingly walk into this fray are the doctors and scientists. Sadly, I need to qualify this since I have come across too many that have the - usually unspoken, but not always - belief that people with stage IV cancer are not really worth the trouble and should be sent home to die. Thankfully, there exist some doctors and researchers that dare to dream. I'm talking about the handful who choose not to give up on us, even when the odds of living a long life with metastatic cancer are, well, pretty close to nonexistent. These are the rockstar docs (I've become a bit of a fan girl for some of them). They face hopeless situations with the crazy belief that these people are worth fighting for. They believe that with enough work, seemingly impossible things just might come true. And even if they don't, they will continue to try their damdedest to find a solution.
As Atticus said,
It was full of beautiful, powerful moments, but Atticus' lines about courage really jumped out to me and have been bouncing around in my mind ever since he spoke them. He explains that courage is
"knowing you're licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do."
I've often been told how brave I am in this cancer journey (and in my first). That has never made much sense to me, as I'm not doing any of this by choice. I would much rather NOT have cancer, and NOT put my family through all of this. Sure, great life lessons, live in the moment, blah blah blah, but I would really prefer not to have cancer at all. Really. REALLY. Really really for real.
I am, however, surrounded by some very courageous people. Perhaps the most astounding and least acknowledged are the caregivers, the partners, the spouses. They voluntarily attend countless appointments, put up with scanxiety, hold the patient's hand while awaiting daunting test results, and take care of rambunctious munchkins when the patient needs to sleep. (That last one might be specific to me.) None of this is required; it is not their bodies that are resentful hosts to this beast, yet they do it willingly. That is courage.
The other group who knowingly walk into this fray are the doctors and scientists. Sadly, I need to qualify this since I have come across too many that have the - usually unspoken, but not always - belief that people with stage IV cancer are not really worth the trouble and should be sent home to die. Thankfully, there exist some doctors and researchers that dare to dream. I'm talking about the handful who choose not to give up on us, even when the odds of living a long life with metastatic cancer are, well, pretty close to nonexistent. These are the rockstar docs (I've become a bit of a fan girl for some of them). They face hopeless situations with the crazy belief that these people are worth fighting for. They believe that with enough work, seemingly impossible things just might come true. And even if they don't, they will continue to try their damdedest to find a solution.
As Atticus said,
"You rarely win...
...but sometimes you do."
Tuesday, March 11, 2014
What Would You Pay For Your Life?
Medicine is expensive.
Healthcare is expensive.
Research is expensive.
Life is expensive.
Is it worth it?
I read an article (thanks to @BrendonStilesMD for tweeting it) which purports that crizotinib (aka Xalkori, aka my life-saving medicine) is not worth the expense.
Yes, this is a very expensive medicine (about $10,000/month), and I am grateful to Pfizer's co-pay assistance program which lowered my co-pay from $1,600/month to $10/month.
Perhaps what bothered me even more than the article were some of the comments, left by doctors:
How? I am not allowed to comment on the article itself (it is only open to medical professionals), but I would love to have a conversation with these posters. One big problem is that statistics are good at making predictions for populations, but they cannot determine what will work for an individual. I know many people who have lived one or two years on Xalkori (a few even three years) with a great quality of life. Yes, this is not a cure, but as my lovely doctor in Colorado said, the goal is to stick around for the next big breakthrough. There are other drugs in trials that give me the hope of tacking on another year or more as I wait for new scientific advances.
The other thing that this article forgets it that because I am on Xalkori, I am not on chemo. My medical bills during those months were many times higher (about $30,000/month). Chemo has the added side effect of depressing the immune system, leaving a person vulnerable to dangerous infections and costly hospitalizations. Thus, Xalkori is actually the cheaper path. Am I missing something?
Perhaps what they are really saying is that it is not worth the cost and effort to keep sick people alive. Which, I suppose, we could debate.
Perhaps what bothered me even more than the article were some of the comments, left by doctors:
"It would be justified if this drug really cures the patient and save a life. After all life cannot be measured in dollars. But it does not cure any cancer at all, merely delaying the inevitable end by a few months or (if the patient is very lucky), one or two years. What right have drug firms to charge such a huge price by pretending that a modest palliation is a cure?"or
"One for the drug companies and a strike out for the patient."
How? I am not allowed to comment on the article itself (it is only open to medical professionals), but I would love to have a conversation with these posters. One big problem is that statistics are good at making predictions for populations, but they cannot determine what will work for an individual. I know many people who have lived one or two years on Xalkori (a few even three years) with a great quality of life. Yes, this is not a cure, but as my lovely doctor in Colorado said, the goal is to stick around for the next big breakthrough. There are other drugs in trials that give me the hope of tacking on another year or more as I wait for new scientific advances.
The other thing that this article forgets it that because I am on Xalkori, I am not on chemo. My medical bills during those months were many times higher (about $30,000/month). Chemo has the added side effect of depressing the immune system, leaving a person vulnerable to dangerous infections and costly hospitalizations. Thus, Xalkori is actually the cheaper path. Am I missing something?
Perhaps what they are really saying is that it is not worth the cost and effort to keep sick people alive. Which, I suppose, we could debate.
Well.
I think it is time to switch gears and take a look at what is possible.
Here is an inspirational, exciting, and funny speech by Dr. Camidge, head of the lung cancer research program at the University of Colorado. My faithful readers may recall that I just flew out to visit with this group. Their program certainly lived up to the hype.
I think it is time to switch gears and take a look at what is possible.
Here is an inspirational, exciting, and funny speech by Dr. Camidge, head of the lung cancer research program at the University of Colorado. My faithful readers may recall that I just flew out to visit with this group. Their program certainly lived up to the hype.
Take a few minutes to watch this. In addition to my obvious personal investment in this sort of thing, I am intrigued by how similar this kind of thinking is to how artists approach their work. Dream big, reach for the impossible, ask "why not?"
Some highlights:
- At 3:30, he talks about being a young scientist starting out. Some of the well-established institutions responded to his new ideas with “we don’t do it like that here.” When he visited the University of Colorado, they responded with, “we don’t know how to do that here … but we’d like to find out.”
- At 4:15 he tells a story that gives me chills, about a drug called PF-02341066. This drug is now known by another name, crizotinib (brand name Xalkori). And it is keeping me alive.
- At 7:55 he describes some out-of-the-box thinking, which his colleagues teased him about and called “pulling a Camidge.” This is now changing how cancer drug resistance is being treated.
He outlines the mantra that drives this cancer revolution.
- One size does not fit all.
- Don’t walk away from a good thing.
- If the cancer moves, follow it.
- Question everything.
Now THAT's more like it.
Along these lines, I am scheduled for a brain MRI on Friday (thanks to my consult in Colorado pushing to make this happen). Deeply hoping it proves unremarkable.
Thursday, January 09, 2014
Coming Out with Cancer
I was at the grocery story the other day and caught sight of an acquaintance I hadn't seen for over a year. I started to walk across the store to say hello, when I froze. I realized that she had no idea about my diagnosis, and I would have to decide whether or not to jump into that minefield when she asked how I have been over the past year.
So instead I walked the other way.
Meeting new people is sometimes a bit awkward for me now, since I never know if or when I should drop the "I have cancer" bomb. I still have my hair, so there is no tell-tale chemo sign. Overall, there is really no external way to tell that I have anything wrong.
Yet, lung cancer has become an important part of my identity. There is not a day that goes by where I do not think of it. I have become active in the lung cancer community, and I have made new friendships because of it. It has profoundly affected who I am and how I think about life. So, like it or not, it is part of me.
I am not ashamed of having cancer, and I am happy to talk about it with people, but the initial coming out is wrought with uncertainty. Will I get the "pity face?" Will I get the list of things I should/should not eat/drink/breathe etc.? Will I get the awful silence that follows the exchange, "What stage it is?" "Stage IV." ". . . . . . . . . . " (That really happened. I wanted to say something to make her feel less awkward, but I couldn't think of anything, so I just sat there as she squirmed.)
There must be other people who feel this way, people who have an important part of themselves that is a somewhat touchy subject. Perhaps this is how members of the LGBTQ community feel? Perhaps people who have experienced a life-changing event feel this? There is no external marker to show that something big is going on, but it is there, and it is important.
I'd love to hear from others who have felt this way, if you woud be so generous to share your thoughts. And if I'm way off base, tell me that too!
I used to say that I wanted to live a hundred lives in my lifetime. This upside of this cancer journey is that it is helping me to walk in other people's shoes and see with their eyes.
There is the yin in that yang.
So instead I walked the other way.
Meeting new people is sometimes a bit awkward for me now, since I never know if or when I should drop the "I have cancer" bomb. I still have my hair, so there is no tell-tale chemo sign. Overall, there is really no external way to tell that I have anything wrong.
Yet, lung cancer has become an important part of my identity. There is not a day that goes by where I do not think of it. I have become active in the lung cancer community, and I have made new friendships because of it. It has profoundly affected who I am and how I think about life. So, like it or not, it is part of me.
I am not ashamed of having cancer, and I am happy to talk about it with people, but the initial coming out is wrought with uncertainty. Will I get the "pity face?" Will I get the list of things I should/should not eat/drink/breathe etc.? Will I get the awful silence that follows the exchange, "What stage it is?" "Stage IV." ". . . . . . . . . . " (That really happened. I wanted to say something to make her feel less awkward, but I couldn't think of anything, so I just sat there as she squirmed.)
There must be other people who feel this way, people who have an important part of themselves that is a somewhat touchy subject. Perhaps this is how members of the LGBTQ community feel? Perhaps people who have experienced a life-changing event feel this? There is no external marker to show that something big is going on, but it is there, and it is important.
I'd love to hear from others who have felt this way, if you woud be so generous to share your thoughts. And if I'm way off base, tell me that too!
I used to say that I wanted to live a hundred lives in my lifetime. This upside of this cancer journey is that it is helping me to walk in other people's shoes and see with their eyes.
There is the yin in that yang.
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