Last Great Hope

When I was first diagnosed with metastatic lung cancer in 2013, the situation was dire. Cancer has spread extensively throughout my body. The only option offered to me for treatment was chemotherapy, a triplet of chemicals which had a 1/3 chance of reducing the cancer, and a 1/3 chance of holding it stable. The last 1/3 was left up to my imagination. Even with treatment, they expected I had about 8 months to live.

Thankfully, fortune smiled upon me and we discovered that my cancer was driven by a ROS1 mutation. This meant that we had a whole new line of attack: we could try to stop the cancer right at the source.

Since November of 2013 I have been taking daily pills that target my ROS1 mutation: Xalkori for 4 years (which worked like a charm, except for a few pesky brain mets, the known weakness of Xalkori). Next were the 11 bumpy months on entrectinib, where slight changes in the brain mets left my doctors scratching their heads after each MRI. Progression vs radiation necrosis, so hard to tell. Then Lorlatinib which didn’t seem to do much of anything.

That brings me to where I am now: TPX. My Last Great Hope.

All of your star-wishing (and a fair bit of persistence) must have worked, because I have secured a spot in the clinical trial! That is, assuming I pass a battery of tests on February 12. And I won’t really believe it until I take the first pill.

I know that I am not completely out of options if this drug fails me, but it brings me to the end of the line for ROS1 targeted drugs. There have been great advances in immunotherapy since my diagnosis, so there are more thing to try. But I’m sure hanging a lot of hope on TPX.

So, wish me luck passing the tests to gain entry to the trial, and then hope it works!

But first - the family is headed to California to make some memories!! Cancer needs to take a back seat for a week. This is family time!

Good-ish

I was surprised and a little embarrassed to see that I have my every-other-week clinical trial checkup on Monday, meaning it has been almost two weeks since I had my first scans on this trial and I still haven’t written an update. Well, patient reader, in a nutshell my scans were good-ish. The lungs and body appear unchanged, and while there were no new spots on the brain, the New Guy (the brain met that was my ticket into the StarTrk-2 trial) looked mostly the same but a little bit rounder with some edema. Since we don’t know what happened during the agonizing 18 days that I was off all treatment, letting the cancer grow completely unfettered, the doc is calling it stable. And stable is good. The next scans will give us a better sense of how this drug will work on my cancer.

Guess when the next scans are - my birthday. I’m going to take that as a good omen.

I’m coping okay with the new drug, entrectinib. I had a whole laundry list of side effects to tell my trial doctor about: 

• Sleep 12 hrs/night
• Numb/tingling mouth 
• Feel slightly off balance
• Drugged feeling about 2 hours post dosage
• Scatterbrained, lose train of thought when interrupted
• Have to concentrate harder to follow conversations
• Very sensitive skin, prickly, pins and needles feeling
• Sometime struggle to find the right word

They designed this drug to get into the brain, and the side effects sure feel like it does!

The sensory stuff is either getting less or I am getting used to it. The main struggles now are the sleepiness (even after 12 hours of sleep!) and losing my train of thought if I get distracted. I’m developing coping mechanisms, like making lists, and using even more post-it notes than I did before so I have reminders everywhere. I am also teaching my children that they have to take turns when they want my attention instead of just all talking at once!

Do you see what is absent from the list of side effects? ANYTHING to do with GI issues!! I didn’t realize how miserable I was with my stomach issues on my old magic medicine Xalkori. I dreaded eating every day, and as a stay-at-home-mom, so much of my life centered around planning food, buying food, preparing food, and cleaning up food. We had more dinners of canned soup or takeout than I would like to admit, just because I couldn’t stand the look or smell of cooking food.

But now I LOVE TO EAT!! I look forward to eating! I love the smell of food! Food is wonderful!

Oh in other news, both of my daughters tested positive for Influenza A last week! We were totally floored when they were positive. They had some sniffles, a cough, and a slight fever and we took them in just because of me, since I am “high risk” and wanted to know what I was dealing with. I guess we were lucky that they got it so very mildly. I got to add Tamiflu to my drug cocktail which was a total blast. Thankfully I never caught the bug.

So, if you haven’t heard from me in a while, that’s what has been going on in my world. All in all, things are good

-ish.

The Best Bad News

I'm sure you have all been following my brain met saga with baited breath ;) so today I will bring you the latest MRI results, which are the best bad news.

The MRI literally says "no definitive disease progression" and yet I am planning to have more SRS, aka brain surgery without the cutting. In order to explain how that is not crazy, let me fill in the back story.

I have been taking crizotinib (Xalkori) for my ROS1+ lung cancer since November of 2013. It has been working amazingly well at controlling the cancer in my body, but it has the one big flaw that it doesn't work well in the brain. Therefore, I get regular brain MRIs to keep watch on that area. In September 2015, the first brain metastasis appeared.

In October of 2015 I had SRS for that small brain met, which was successful. (Yay!)

In May of 2016 I had SRS for a new small brain met, which was also successful. (Yay!)

In July of 2016 I had a follow up MRI which revealed two new, tiny (1-2 mm) spots. They were too small to treat just yet, so we decided to watch and wait.

I have been having brain MRIs every 2-3 months since then, and each time they have shown no growth. Upon getting the results for my most recent MRI, my wonderfully thorough radiation oncologist (who deserves the title of Rad Onc), decided to dig a little deeper into my stack of MRIs because, as he put it, "I don't trust anybody." He discovered that when you compare my most recent MRI to the earliest one where these questionable spots appeared, you can actually see some growth.

Then how did each scan show no growth, you wonder?

MRIs are very precise, but if the change between each is a fraction of a millimeter, you will not be able to see it. However, when you add up many fractions of a millimeter, you eventually get 2-3 mm growth. And that is exactly what he discovered when he compared the most recent to the first scan.

We decided it would be safest to do another round of SRS and take care of these mets now, rather than wait for them to grow any more and cause problems. They are still each barely 5 mm, but we don't want them to bring any friends.

So, the bad news is that I am going under the "knife" again, but the good news is that the growth is so very slow that it took some major searching to find it.

I go in for the mask fitting on Friday, and will have the SRS a week or so after that. I hope I can schedule it not to conflict with two adorable little girls turning 6, because that stuff is important!

Let me just say how weird it is that this is so normal to my family. I told the kiddos that some tiny cancer spots in my brain have grown a bit, so we are going to use that big machine to zap them again. My daughter ran over and got my old radiation mask and said, "Here Mama, you can use this again!" It's good that it doesn't bother them much, but it is a very strange thing to be so normal.

Brain Surgery Light v2.0

Having been through the halo version of SRS (stereotactic radiosurgery) and the fancy new frameless "Edge" technology, I definitely prefer the latter. This time, they didn't need to numb my head (which didn't regain full sensation for about 3 months), or puncture four spots around my head to anchor the frame (leaving bruising and swelling, plus paralyzing one eyebrow for about a month). 

Instead, I was fitted with this snug little mask which they clamped into the machine. There were also cameras around the room which projected motion-sensor beams, similar to the kind you see in spy movies. If I moved more that 0.5 mm, the beams would break and the treatment would stop. This is how they are able to target a brain met that is only 5mm while causing minimal damage to the surrounding brain tissue. Amazing.

The whole thing only took around an hour, which included getting into the machine, the treatment, and a quick check in with my doctor afterward. 

The mask was much less invasive than the halo, though I found it incredibly tight fitting, almost to the point of me thinking that if the treatment lasted much longer I would need to speak up. I kept reminding myself that I went through unmedicated childbirth, I can handle this. After the procedure I told my doctor about the painfulness of the mask, and he said that he has had two people complain about it, me and a small child. It seems that those of us who don't have a lot of padding have to put up with it basically pressing on bone. Yay.

See the marks it left all over me? That thing was ridiculously tight.

I got to keep the mask, and my kiddos enjoyed playing with it. Each wanted a turn wearing it and lying very still as they pretended to have brain radiation. The other two would pretend to be the robot arm of the machine that delivered the "laser beams" and the other would make the zapping noises. I love how kids process tough situations in such a literal play-acting way. 

Now I am dealing with all the awesome steroid side effects - and thankfully I only have to take them for a few days. Hats off to my friends who have to be on them long-term. They are no fun at all, but they keep the brain from swelling which is, ya know, pretty important. So I've got the body aches, flushed cheeks, weird sleep challenges despite being really tired, and the stomach feeling where I can't tell if I'm ravenous or nauseated. 

The post-SRS effects are primarily a headache (though not nearly as bad as last time), and fatigue, like feeling really exhausted kind of fatigue. 

I will have another MRI in two months as follow up, and the plan is to keep going on Xalkori as long as possible. It has already worked longer than average (1.5 years is the median for ROS1; I have been on it for 2.5 years). In the metastatic cancer world, if something is working you don't want to jump ship too fast. There are a finite number of things that can keep this in check. If the brain mets come at this slow pace, one at a time every 6 months or so, the rad onc feels that it is safest to just keep spot zapping them as needed. If the pace changes, then we will have to look at other options. So, I just keep chugging along.

But ya know? It's not easy. So here's the straight dope.

This is hard. Living with terminal cancer is really, really hard. I think my little family handles it mind-bogglingly well, but don't let our semi-together appearance fool you into thinking this is easy. We have been lucky to have stretches of time where we can let cancer sit on the back burner for a while, but it is always there, always waiting to bubble over and demand attention again. 

Things that are hard while recovering from "brain surgery light":

- 2 screaming 5 year olds

- telling your kids during bedtime stories that no, I will not go downstairs and get you a glass of water. If you really need one, go down and pour a glass yourself. And then hearing a scream and "Mommy! I spilled water everywhere!" And realizing it would have been much easier to just go downstairs in the first place, but lying down felt oh-so-nice.

- cleaning up a 5 year old's poop accident

- feeling guilty as I wonder how many 7 year olds are expected to do the washing up after dinner because mom doesn't feel well

- comforting a screaming 5 year old who had a wipe out getting out of the bathtub and hit her head

- jumping out of bed in the middle of the night because you hear "Mommy, I'm gonna throw up!" (Fortunately, she didn't.)

- explaining to your kids that a beloved teacher has just died of cancer. "But Mommy, YOU have cancer!"

- After thanking your eldest for always stepping up and handling things so well when Mommy isn't feeling good, to hear him say, "I remember before you had cancer, Momma" and hoping he really does remember.

So many of those things are just typical life with small children, which any parent will tell you is not easy on a good day. Throw a major illness in there, and it is just really really hard.
 

And while I have become very adept at managing the host of fun side effects that come with my daily cancer treatment (my purse looks like a walking pharmacy) and I can give myself shots without batting an eye, it is a daily trudge. We hear so much "rah-rah-rah! Beat that cancer" rhetoric out there, but the story is totally different for the metastatic bunch. There is no end to this. I will be in treatment forever, well, until I die or decide I've had enough. Don't get me wrong, I am immensely grateful to be alive, but it is a strange reality. I remember on a form I had to fill out at the hospital one time, that asked if I ever had suicidal thoughts, and I laughed out loud. I actively choose not to die every day when take my pills. Those of us on this metastatic path are just hoping for a few more weeks, months, dare we hope years of this uncertain life. (I know suicide is nothing to laugh at, and my heart aches for people dealing with mental illness, but the absurdity of that question in that moment struck me as funny.)

So this is hard. Really hard. And I'll reiterate what I thought last time I went through SRS, that whoever said SRS is a breeze clearly didn't have 4 year old twins. They are 5 now, and it still wasn't much easier. Don't get me wrong, I know that this was MUCH easier than having a craniotomy, that Xalkori is much easier than chemo, and that there are much harder things coming for me down the road. But it is still really freakin' hard.

And yet, this is the path I am on, and I desperately hope to keep walking this path for a long, long time. So it goes.

Riding the SRS Train

Well, another little bugger showed up on my MRI. The good news is that it's small (5mm) and we caught it early so SRS (stereotactic radiosurgery) is a great option again. Also, the Xalkori is still working great on the rest of my body - I've been on it for 2.5 years, which is pretty remarkable.

I go in tomorrow for the planning session. The other upside is that the cancer center has a brand-spankin'-new machine which does NOT use the Frankensteinesque drills-into-your-skull frame. I'll get a better look at the fancy new tech tomorrow.

What a surreal thing this stage IV life is.

So, I'm back on the SRS train. Just hope it keeps on chugging along for a long time.

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.

Adventures in Brain Metastases

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

Until this past Monday, that is.

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

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





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



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

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





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



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

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

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




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

Cancer On My Mind

Ha ha - I couldn't help myself.

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

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

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

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

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

Oh, technology!

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

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

The Other Shoe

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

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

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

I bet you can guess where this is going.

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

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

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


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

Small But Mighty: ROS1ers Unite!

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

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

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

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

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

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

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


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

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

Your Heart's Desire

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

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

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

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

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

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

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

"… Like Harry?" I asked.

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



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


How do I prepare my children for the future?


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


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

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

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


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



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

The Changing Face of Cancer Care

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"Relapse."

"Decided not to continue treatment."

"Passed away just before Christmas."

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

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

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

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

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




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

Scan Results=Yay! Blood Clot=Boo!

For those of you who follow my scan/doctor appointment schedule (which is amazingly sweet, by the way) you would be passing the time this weekend patiently waiting for scan results on Tuesday. And you would have been almost as shocked as I was Friday afternoon when my phone rang, and the caller ID showed that it was the cancer center. By the time I answered the phone and heard my oncologist's voice, I was trembling. Why in the world would she be calling me when we had planned to discuss the results at my appointment on Tuesday?

She quickly said, "Don't worry, your scans are fine. But we found a small blood clot and would like to be safe and start you on heparin injections. I'm so sorry you will have to give yourself shots."

Me: "But my scans are fine?!? Okay, when do I start?"

I don't love the idea of twice-daily shots, but I like it a lot better than cancer progression!

I went in to the clinic Friday afternoon and learned how to do the Lovenox shots. So far, they are no big deal, and I don't yet have the lovely bruises on my stomach that I was told to expect. The nurse commented on how calm I was giving myself the shot, and that most people's hands shake the first time they do it. It's all perspective; when the doctor called I was sure I was getting terrible news. In comparison, these shots are no big deal. Funny what you can get used to!

So, I continue on my amazing targeted med Xalkori. 16 months and counting!

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

Breathing Easy

All is well in scanville! I've just passed my one year mark on the wonder drug Xalkori, and now I can breathe (relatively) easy until my next scan in three months.

Speaking of breathing, here is one of my favorite lung cancer infographics. 

At 3 pm EST today I will be participating in the WEGO Health Activist Twitter Chat (#hachat), which today is focused on lung cancer. Lung cancer bloggers Linnea Duff (@1111linno) and Samathan Mixon (@mixon_samantha) will also be participating, and my fellow ROS1er Janet Freeman-Daily will be guest hosting.

We will be addressing these questions:

• Q1: Why do you share your lung cancer journey online? What motivates you to write a post?
• Q2: What kind of info do mbrs of online lung cancer community want? What messages do you try to convey?
• Q3: On which social media sites do you share lung cancer info? How do you choose what info to share on different sites?
• Q4: How/where do you find content about lung cancer that you want to share? What makes content you find share-worthy?
• Q5: How has the lung cancer information you share changed over time?
• Q6: What reactions do you get to your lung cancer blogs and social media posts? What content gets viewed or “liked” most?

Please join us! It should be a lot of fun. 

Sharing Our Story

I almost titled this post "Sharing My Story," but realized that this is much bigger than me. Today I had the honor of speaking at the Peter A. Kaylor Lung Cancer Walk in Allegan, Michigan. I know how lucky I am to be able to speak out about this disease, when so many others who have gone before me are no longer able to do so.

This was what I had to say about my one year, four months, and five days (so far) of living with lung cancer.

~ ~ ~ ~ ~

It started with a cough that wouldn’t go away. But everybody I knew had a cold, so it didn’t seem like a big deal. I started to feel a little better, but before long I had another chest cold. And I was exhausted, but I was in grad school full time, working, and raising a 4 year old and infant twins. Who wouldn’t be exhausted?!? But my breathing kept getting worse, so the doctor thought it was a return of my childhood asthma. We tried one medication, then another, then another. But I kept getting worse. Finally, in May of 2013 they sent me for a chest CT scan to see if there was something else going on. There was. The scan revealed a large mass in my left lung, that had wrapped all around and had caused my lung to partially collapse. A biopsy confirmed that it was lung cancer, and further testing showed that the cancer had spread to the other lung, my spine, my hip, my ribs, my shoulder blade, and my liver. I was unequivocally stage IV, inoperable, at age 37.

At that time, I thought it was impossible for a nonsmoker to get lung cancer. Clearly, I was very wrong.

So I began 4 months of chemotherapy. July, August, September, October, I struggled with side effects and tried to spend as much time with my family as humanly possible, to “make memories” as my social worker advised. I got to see my little girls learn to ride tricycles, and I got to see my son start kindergarten. The amazing thing was that as the summer progressed, my breathing started getting better. I was able to climb upstairs and kiss my son goodnight again. I was able to walk around carrying my little girls. And then the scans confirmed it: the chemo was working, and my cancer was shrinking. But as October rolled around, a question loomed: what next? The cancer was shrinking, but not gone, and a person can only tolerate so much chemo before the toxic side effects become too damaging. We discussed what they call “maintenance” chemo, a lower dose of chemo that they can give for as long as the patient can tolerate it, to try and keep the cancer at bay.

Meanwhile, the shock of having stage IV cancer was starting to wear off, and my thirst for knowledge had kicked back in. I started reading about personalized medicine, where they can test the tumor and figure out what went wrong to cause the cancer, called the cancer “driver.” My oncologist had tested me for two common ones, but my obsessive reading and research revealed that there are several other rare ones that can be tested for. I asked my oncologist for further testing and on October 31 – Halloween – I got the wonderful, game changing news that we had discovered what went wrong to cause my cancer, and that there is a drug to treat it. In November, I started on a brand new drug called Xalkori. I have been taking this medicine – two pills a day – for 11 months, and currently I have no evidence of active cancer anywhere in my body.

But I know the battle isn’t over. My wonder drug is amazing, and I am thankful for the good quality of life I have now. I still have side effects, but they are not as bad as chemo. However, I know that my cancer will eventually become resistant to this treatment, that my cancer will figure out a way around my super drug. If/when that time comes, I will pursue other treatments, plans B, C, D, and so on. I have stage IV cancer, I will always be in treatment.

To say that this past year has been life-changing is quite an understatement. I certainly appreciate things more than I used to, and I think I have gotten even bolder and more outspoken than I used to be, if that is possible. And I have connected with a whole lung cancer community full of incredibly strong and wonderful people, who I now consider my “lung cancer family.” Sadly, I have learned that this disease can strike absolutely anybody.

There’s Craig, diagnosed at age 60
Janet, diagnosed at age 55
Mark, age 47
Lisa, age 41
Molly, age 39
Samantha, age 33
Emily, age 28
Burton, age 23
and Corey, age 22

The thing we all have in common is that we were all diagnosed at stage IV. Stage IV. The other thing we all have in common? None of us deserved this.

Here are some sobering facts:

• Lung cancer is the second leading cause of all deaths in the US.
• Lung cancer kills almost 2x as many women as breast cancer and 3x as many men as prostate cancer.
• Lung cancer in never smokers is 6th leading cause of US cancer deaths.

And yet, I chose to remain hopeful. I know that I am one of the lucky ones. Things are changing fast in cancer research. If I would have gotten this a few years earlier, I probably wouldn’t be here today. If I hadn’t pushed to get more testing done on my tumor, I might not be here today. Chalk it up to stubbornness, perseverance, or just dumb luck, I am very thankful to be here talking to you today.

I am alive because of research. There are some really exciting discoveries going on out there and some amazing things coming down the pike. My goal is to stick around long enough to see them.

Real Life

Sometimes I find it hard to tell the difference between real life and fiction. This is probably due in no small part to growing up obsessed with books, stories, and plays. I tend to see life through the lens of a story: what is that character's arc? Where is the surprising twist? The "all is lost" moment? I have always been particularly drawn to stories of a plucky young heroine/hero (Buffy, Ender, Katniss, Tris) facing seemingly insurmountable odds in a bizarre reality, who somehow finds a way out in the end.

This past weekend I attended a conference in Boston for people with stage IV lung cancer, whose tumors have specific genetic changes (EGFR, ALK, and ROS1) that can be treated with targeted medicines. It was remarkable to hear from the rock star doctors who are conducting the research that is keeping me alive. What was possibly even more powerful, however, was to sit in a room full of a hundred people who are on this same crappy journey as me. Many of these people I had already "met" and they have become an important support system for me, my lung cancer family. But all of my interactions with them have taken place in a virtual space, social media or patient/caregiver online groups. At times I have wondered if they actually exist or if my mind had created them as a coping mechanism (for the Buffy fans out there, think S06E17 "Normal Again"). I'm not naturally a very huggy person, but I felt the urge to hug each and every person I met there. I'm embarrassed to admit that the words "You're real!" escaped my lips at one point. 

All of us in that room are living in a weird dual reality, looking (and often feeling) quite normal but knowing that we have advanced, incurable cancer - "eventually terminal" as one person said.

It's a strange reality to live in, which is part of why I feel like the line between real life and fiction sometimes seems so blurry. I think part of what makes it all seem so unreal is the juxtaposition of things. I spend my days with my adorable kiddos who are so full of life, then check my phone and read about another person entering hospice. I look and feel relatively normal, but know that my odds of being around 4 years from now are less than 4% (if you believe the statistics, which some say are inaccurate because of how quickly things are changing - THANK YOU RESEARCH).

I am so glad I went to Boston last weekend (where I also got to catch up with my old Rough & Tumble Theatre crew!!!). I geeked out on cancer research, and meet face to face with so many people that have inspired, informed, and encouraged me throughout this journey. Beth, Luna, Robyn, Jon, Leslie, Andy, Kathy, Jeff, Corey, Carole, Robyn, Tony, Nicole, Dan, Bernie, Craig, Kris, Ria, Bonnie, Kyle, Sharon, and everyone else, thank you for being real!

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?!?

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: 

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.

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: 

Join the #WhipLungCancer campaign. Here is my video:

"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.
 

Changing my name to NED

As I lay in bed this morning, my semi-conscious mind tried to decide if I was ready to face today, a day which entailed finding out if my cancer was, in fact, starting to invade my kidneys as was suspected from my last CT scan. As usual, Jason was already up and taking care of the kids because, well, because he is awesome and because my sleep needs are now much greater than they used to be. I heard him bound up the stairs and say into the phone, "Let me check if she is awake." I was, and I was greeted by the cheery voice of my wonderful PA. "It's good news!" Not only are my kidneys clear, but all the bits of tumor that are left in my lung are dead. There is no evidence of cancer living in my body. I have achieved the holy grail of stage IV cancer, NED (no evidence of disease).

!!!!!!!!!!!!!!!!!!!!!!!!

And it is Jason's birthday! He is quite the good luck charm. One year ago today I got the results of my first scan after starting chemo, the scan which would tell us whether or not my cancer would respond to treatment. Needless to say, a very important and very terrifying moment. 

Two years in a row of great scan results on your birthday, Jason! I got to double celebrate with this awesome crew today.

If you are not an inhabitant of Cancerville, you may be wondering why my CT scan from last week would show something different than the PET from yesterday. It helps me to think of the CT scan as a high-definition camera that takes black-and-white photographs of the inside of the body. It can detect every lump and bump, but it can only show what it looks like, and can't tell the difference between a live or dead tumor, scar tissue, cysts, etc. A PET scan involves injecting the patient with a radioactive sugar substance. It goes through the bloodstream for about an hour and every part of the body that eats up sugar will glow when the patient is in the scan machine. Cancer gobbles up sugar, as do muscles, which is why you are not supposed to engage in much physical activity for a day or two prior to a PET scan.

A fellow cancer patient told me that he was advised not to text while in the prep area for his PET scan. I thought about this briefly while the stuff was going through my veins, but I though just a little bit of time on my phone wouldn't be a big deal. Yes, there was a "no phones" sign, but I thought that probably just referred to talking on your phone. And technically I only replied to one text, the rest of the time I was just scrolling and reading. Fast forward to the end of my scan, when the technician slid me out of the scanner machine and said, "Were you using your phone in the prep?" Uh, yes. "Are you left-handed or right-handed?" Left. With a curt nod she turned and walked out of the room. A few minutes later she returned and said, "I just talked with the doctor. The muscles in your left forearm are lighting up, but he said that is just from scrolling on your phone. You REALLY aren't supposed to use your phone in there!" Busted.

This was my view as I drove off to my PET scan yesterday. 

Such a lovely bunch of well-wishers!

For clarification, these wonderful results don't really change anything. I still have to take my amazing targeted med twice a day (THANK YOU XALKORI!), and I still have to deal with the less-than-awesome side effects of the drug, and I still have to go back for scans every three months, and I still know that at some point the cancer will likely develop a resistance to the meds. Unlike many other cancers, such as breast and prostate, there are no markers that you can track from a blood test. I can't see if my numbers are going up or down as an indication of the state of my cancer. With lung cancer, the only reliable way of knowing (currently) is to wait until it is big enough to grow into a tumor visible on a scan. So, it is quite possible (maybe even probable) that there is some cancer left if there. But, for now, it is just fantastic to know that there is no visible cancer in my body.

And for the punch-in-the-gut portion of this post:

I asked Zander what he wished for when he blew out his birthday candles. 

"I wished that you and Daddy would never be dead." 

A strange kind of boogeyman enters your world when you become a cancer family. I've learned that the thing of nightmares can come from within my own body. We all face the same impermanence and chaos of the world, but a journey like this forces you to come face-to-face with mortality in a way that many others can ignore. I miss that ignorance, and it makes my heart ache to realize that my children will grow up never having known it.

I'm NED for now - and hopefully for a long, long time - but I'm forever changed by this awareness. It's not necessarily a bad thing, but it certainly makes me view this brief blink of time we get on this earth in a whole new way.