Bumpity Bump Bump

It’s about time I update this little blog.

I’m doing decently, much better than I was when I wrote the last post. The increase in steroids has proven to be incredibly helpful, making it much easier for me to function. My balance is still a mess, but I no longer feel motion sickness when I move my head (that was pretty awful). I’m embracing all the fun steroid side effects (hello again, puffy face), because I feel so much better thanks to these not-so-fun meds.

Currently, the main issue is my balance. I’m fine when I’m seated, but I feel wobbly as soon as I stand up. If I’m holding onto something, I’m pretty stable, so I casually lean on things like nobody’s business. Really, if there were a contest to see who could nonchalantly lean against any wall or ledge, I’d be the champ.

The general consensus from doctors across three states is that the changes in my cerebellum are treatment effect, rather than new growth. The trial drug is known for causing balance issues, so who knows what is causing what. The plan now is to watch and wait, and hope that my cerebellum can heal and nothing starts growing again.

Just another bump in the road.

Meanwhile . . .

My latest chest CT showed that I had a small pleural effusion. That was a shocker. These are not uncommon in the lung cancer world, but it was a brand new one for me. I haven’t had a thing wrong with my lungs since 2013 (kinda funny that my lung cancer has mostly caused brain issues for the past 6 years). I had a thoracentesis, which drained 240 ml of malignant fluid out of my chest cavity. It was much less scary than it sounded, though I had to go for the procedure twice since they told me you can take blood thinners the night before (you can’t). Reminder to self - if you are being given instructions over the phone about an upcoming surgical procedure and they sound incorrect, question them. Don’t become self-conscious about second guessing instructions too much.

The upside of having malignant fluid drained from my body was that I was able to ship it to Colorado and donate it to the ROS1 project, so they can grow cell lines for research. Precious fluid!

Another pothole in the pavement.

Also meanwhile . . .

My tumor markers continue to rise, so who knows what is going on, except that likely trouble is brewing somewhere.

Bump bump bump.

I recently read The Miraculous Journey of Edward Tulane, and it is hard not to feel grateful for what you have after reading that.

"Edward knew what it was like to say over and over again the names of those you had left behind. He knew what it was like to miss someone. And so he listened. And in his listening, his heart opened wide and then wider still."

"But in truth,' said Bull, 'we are going nowhere. That my friend, is the irony of our constant movement."

If you haven’t read that book, do yourself a favor and check it out. The world feels a little bit more doable afterward.

"If you have no intention of loving or being loved, then the whole journey is pointless."

I couldn’t resist that last one.

Unclear

Things are not great in CancerLand. My rising tumor markers and MRI changes have confirmed that the spot in my cerebellum has grown back and is starting to cause symptoms.

The great/terrible/ironic thing is that I’m not facing widespread cancer progression; the only spot causing troubles is the same bugger in the cerebellum that we tried to remove back in October.

My sense of equilibrium is off, and I was having headaches and nausea until we increased my steroids earlier this week. Now, some of the imbalance is likely caused by my trial drug - it is a frequently reported side effect - but certainly some is from the mass. Friends who knew me in my physical theatre / Dell’Arte days will find it strange that I now feel intimidated by a staircase lacking a rail. I reminisce about how I used to stand on someone’s shoulders without batting an eye. Flowers for Algernon’s Charlie comes to mind: I know I have done all sorts of physically challenging things in my life, but I cannot fathom them in my current wobbly state. To make things even more strange, when I sit down, I feel completely normal. It’s only when I stand up that I feel like I’m on a boat.

Where do we go from here?

The best case scenario is that I can get another brain surgery, and that they can remove the entire mass from my cerebellum. Waiting to hear from the neurosurgeon to see if that is possible.

The second option is to get another round of targeted radiation to the mass and hopefully knock it out. I’m doubtful that will be possible, since it has only been 9 months since I had radiation to that area.

If neither of those are possible, I will switch to a chemo that gets into the brain (likely Temodar).

For now, I wait for the experts to weigh in on what is possible at this point.

And we try to squeeze more fun out of the summer.

Radiating My Brain

I have completed treatment 2 of 5 for my targeted brain radiation. You may recall that, since there WAS living tumor in the section they removed from my cerebellum, we decided to radiate the perimeter around what was removed, in case there were any tumor cells there.

Well, let me just say that

Radiation

Is

Kicking

My

Butt.

Check out the imprint the super-tight mask leaves on my face.

It wears off after about an hour.

I was mentally prepared to feel wrecked after surgery; I was not so prepared for this. In addition to the exhaustion, I have had awful headaches and nausea. I talked to my Rad Onc about this and he said it was from brain swelling, and prescribed a course of steroids. Yay, more steroids. But if they stop the headaches, I’m happy to take them.

The upside of spending my life on the couch is that I have been doing projects like teaching my kids how to use the sewing machine.

It’s still Lung Cancer Awareness Month, and I still have lung cancer, and I’m still raising money to fund research specifically focused on my rare ROS1 mutation. I’m trying to reach $8,000 by the end of the month. Here’s the link: https://www.supportalcf.org/ros1/ToriTomalia

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.

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.

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

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

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

Patience

Cancer is forcing me to learn a whole new kind of patience. Though I am starting to feel fairly decent on my new meds, my stomach is still unpredictable, and I don't have the energy I used to have. In some ways, because I feel close to normal it is all the more frustrating to face my limitations. I can't multi-task as seamlessly as I used to, which I attribute to the powerful medicines that have been bombarding my body for the past 6 months. I find myself getting overwhelmed when I'm trying to follow several things at once, whereas I used to thrive in these situations. Janet of Gray Connections wrote a lovely piece about how this "chemobrain" side effect has helped her to empathize with people who face various challenges. (Janet is also a ROS1+ stage IV lung cancer fighter, and a lovely and brilliant lady.) This experience is forcing me (sometimes dragging me kicking and screaming) to become more patient with myself and accept that things may need to move at a slightly different pace now.

The funny thing is, I've often attributed my impatience to having bone cancer as a teen. I had just started high school, and was wrapped up in trying to figure out that world when BOOM! Cancer. I learned that your whole life can change in an instant. When I finished treatment and had the wonderful gift of living, the notion of how fleeting it all is stuck with me. 

Case in point: 

Jason and I met in November, got engaged in December, got married in April. 

When something is right, don't wait!

I don't mean to say act foolishly, just don't waste time doubting yourself and making excuses.

And if my kids are reading this one day: remember that Dad and I were both 29 and had years of dating experience so we were able to assess the situation well. Be cautious about rushing into a lifelong experience at age 18!

When I was traveling around Australia several years ago, I thought I would try my hand at scuba diving so I signed up for a 3-day / 2-night scuba boat excursion on the Great Barrier Reef. I was recounting this to my sister a few months ago and she commented that I had never scuba dived before, so how did I know I would like it? I didn't really know how to respond. It hadn't occurred to me that I might not like it, and even if I had not enjoyed diving, I'm sure I would have found something else to do on the boat which would have been fun. 

When an exciting opportunity presents itself, say yes. 

I think this philosophy has been a big part of what drives me. As a result of this, I have led a pretty great life. 

But I'm scared

That's okay, I'm scared too.

I've been called fearless, but they're wrong.

I'm, sometimes, beyond terrified.

But sometimes, beyond terrified

Is where you need to be.

So now I am trying to balance impatience with patience, and gain everything I can from both. I guess this is my gift from cancer. ...kinda wish I could have learned an easier way!

I am looking forward to a lovely holiday season with my family, and hope to have many more. Thank you to everyone sending their love and support. It means so much to me!

My wishes for you....
Enjoy the moment.

Play.

Love.

Laugh.

Make mistakes.

Be bold.

Say yes.

Live.

And never pass up the opportunity to pee.*

Happy holidays!

*My old friend Dan gave me this piece of advice many years ago, and I have found it to be surprisingly useful in day-to-day life. You kinda have to pee, but think you will just wait to get home - just take Dan's advice and go now. Your bladder will thank you. 

Xalkori - What a Joy, What a Pain

The past few weeks have been pretty challenging. The side effects from my new superdrug, Xalkori, hit me hard. Hats off to fellow stage IV fighter and Xalkori user Kim (you can read all about her at aquariusvscancer.com), who warned me that I should give myself a good month to settle into the side effect routine with this drug. Boy, was she right.

I've had a crazy number of side effects: nausea, vomiting, reflux, taste changes, constipation, diarrhea, stomach cramps, dry eyes, blurry vision, achy knees and hips, fatigue, and strange strobe-like visual effects.

That last one is pretty fascinating. When I have been in a dark room for a while (such as watching a movie) then move into the light, for a few minutes I get tracers around moving objects, sort of like those stroboscopic photos I remember seeing in Boston. I went to the eye doctor to check out my intermittent blurry vision and he determined it was because of how dry my eyes are ("they look like stucco"). While a variety of eye drops can help with that side effect, he said he was not sure that he could do anything about the strobe-effects. "Oh, that's fine," I said, "I kinda like those."

The taste changes are mostly just annoying. At first I thought I had burned my tongue, because everything seemed to lack flavor. At the same time, things took on this strange, overly-sweet artificial-flavor, like eating sweet plastic. The only things that I still enjoyed were salty and bitter things. Not a big deal, but a bit disheartening when I was already struggling to eat.

The stomach stuff has been the real challenge. Weeks 1 and 2 were really rough, when I felt nauseated pretty much all the time. I would also get these terrible stomach cramps, followed by (excuse my bluntness) horrible gas. In a house with two kids in diapers, we are not subtle when we smell something foul. There were several funny moments when I was curled up clutching my stomach, and Jason started checking the girls' diapers. "Okay, who needs a bum change." When no dirty diapers were found, Zander kept looking around the room shaking his head, "Why do I keep smelling something stinky?!?" Then Mikaela came over to me and said, "Mommy, you have a poopy diaper!" Oh, the comedy.

However, things were gradually improving with the nausea when I had a few bizarre episodes. My heart started racing, I had trouble catching my breath, and I got dizzy. About 20 minutes later I felt completely fine. I contacted my doctor to let her know what was going on. She told me to stop taking the Xalkori and come in to see her. When I got to the clinic, I started having another one of the spells, so they sent me to the ER. From there, they said that they needed to admit me to the hospital so that they could keep me on a heart monitor, since Xalkori can have rare cardiac effects.

Of course, all of this happened while Jason was preparing for finals. Really, the best frame of mind for writing your final papers is to get a message from you wife saying that her doctor sent her to the ER and now they are admitting her to the hospital. Ugh. I don't know how he does it.

They ran a gazillion tests on me and the good news is that the could not find anything wrong. My heart looks great, blood work is just fine, the chest CT showed everything was stable with possibly a little more shrinkage (encouraging since I have only been on the Xalkori a few weeks). They think it was probably a combination of dehydration which led to the dizziness and triggered a panic attack. They sent me home with a clean bill of health and a prescription for Xanax should it happen again.

Since then, things have been pretty good, though I still struggle with nausea in the mornings. The trouble is I have never been a breakfast eater (my stomach always feels a little off when I wake up). Now that I need to take these pills twice a day, I need to make myself eat something for breakfast since taking it on an empty stomach is WAY worse. I am finding my way through that, and usually feel decent by midday. I realized that all of the crumminess I feel now is a side effect of the meds, not from the cancer. It is a fine point, but an important one. It feels more positive in some way, and feels like the balance is tipped in my favor.

The strangest thing for me now is that my doctor doesn't need to see me again until after my scan at the end of January. How weird is that? She said as long as I continue to feel okay, I am considered stable so it is just a matter of managing side effects and chugging along.

I am thrilled to give my veins a rest, and I will happily take these side effects since Xalkori gives me another shot at controlling this disease. I am going to try acupuncture since I've heard it can work wonders with digestive issues. I hope I can be one of the lucky ones who can stay on this drug for two or more years.

In other news, this blog got nominated for the "Best of Health Blogs 2013" contest. If you feel so inclined, you can click on the link below to vote. I doubt it will win (the current top-ranking blog has close to 3,000 votes) but it would be cool to break the top 10.

Healthline

Knowledge is Power

This belief has driven how I respond to stressful situations throughout my life.

When I was pregnant with our first child, I took every class I could find, read lots of books, and watched many hours of birth videos (thanks to my midwife sister). I learned and got ready.

When I found out we were having twins, I read books and asked questions of every twin I knew. As the pregnancy progressed and took a complicated turn, we were told that the girls would likely be born severely premature and if they survived they would face a lifetime of challenges. In response, I started reading about raising children with special needs. I subscribed to blogs written by some amazing families with special children. I got prepared.

When I was diagnosed with lung cancer, I dove into the research and tried to learn everything I could about this disease.

Actually, that is not quite true. For the first few weeks I actively avoided reading anything about it. I knew enough to understand how dire it was. I couldn't face seeing it in black and white.

Eventually, I took a deep breath and started reading.

Terminal.

Eight month median survival.

Gulp. Well, now I know. Now I will learn all that I can.

So, THEN I started wading through journal articles that were way over my head, desperately trying to understand this thing that was taking over my body.

One very interesting area of research is the driver mutations for adenocarcinoma. By analyzing a sample of the tumor, the doctors can sometimes determine what is causing the cancer to grow. This has been a game changer in the world of NSCLC. Rather that using chemotherapy, which as Jason said is like a shock-and-awe campaign on the body, there are now a handful of drugs that are specifically designed to target a few driving mutations.

Early on in my treatment, my oncologist tested my tumor sample for two common driver mutations with targeted drugs, EGFR and ALK. Sadly, I did not test positive for either. Over the next few weeks, as I gradually started to understand a bit more about this cancer, I learned that there are actually over a dozen known mutations, each that seem to correlate to certain population characteristics (smoking status, age, race). I went to my next appointment with my long list of possibilities and said that I wanted to be tested for all of them. Unfortunately, the sample that they had taken during my biopsy was too small to send off for this full battery of tests. Since the chemo was working, it made more sense to continue on and wait until my cancer started growing again to biopsy more tissue and test for mutations.

But something kept nagging at the back of my mind.

Fast forward to my sixth cycle of chemo. My oncologist was out of town, so I had a short visit with the nurse where she mentioned that I would be starting maintenance with avastin, or alimta, or alimta and avastin. I left feeling a bit unsettled and dove into researching maintenance therapy.

And that nagging feeling came back.

Then it dawned on me: there wasn't enough tissue left to test for a dozen mutations, but I bet there was enough to test for one.

I emailed my oncologist and asked if we could test the sample for the ROS1 mutation. I had a hunch.

I bet you can guess where this is going.

Yes, the test came back and revealed that we have found what is driving my cancer. And even better, there is already an FDA approved drug to treat it, crizotinib, plus several others possibilities currently in clinical trials. 

This chart shows the breakdown of mutations in NSCLC. See that tiny little pink sliver at 1%? That's my tumor's mutation!

Source: Targeting Tumors Early: Trials Push Novel Agents to Forefront

Targeting Tumors Early: Trials Push Novel Agents to Forefront

- See more at: http://www.onclive.com/publications/oncology-live/2013/january-2013/targeting-tumors-early-trials-push-novel-agents-to-forefront/2#sthash.IHaQjWge.dpuf

Targeting Tumors Early: Trials Push Novel Agents to Forefront

- See more at: http://www.onclive.com/publications/oncology-live/2013/january-2013/targeting-tumors-early-trials-push-novel-agents-to-forefront/2#sthash.IHaQjWge.dpuf

This is pretty exciting news, as it opens up a whole new treatment path. I will be meeting with my oncologist on Tuesday to discuss starting crizotinib. I have heard that this drug comes with its own set of challenging side effects, and it can take weeks to months for your body to adjust to it. Most people say that once you settle in, it becomes more tolerable than chemo. Plus, it is administered in pill form, so I will get a break from IVs for a while!

Most importantly, though, it means I have more options. I know that I will be dealing with cancer for the rest of my life, so the more tools I have to work with, the better. I keep reminding myself to temper my excitement, that there is always the chance that I will be in the minority for whom the targeted drug does not work, and cancer can eventually mutate again in response to treatment. For now, though, I am going to revel in my mutation.

Targeting Tumors Early: Trials Push Novel Agents to Forefront - See more at: http://www.onclive.com/publications/oncology-live/2013/january-2013/targeting-tumors-early-trials-push-novel-agents-to-forefront/2#sthash.KPAklSr7.dpuf

Farewell Carboplatin, Thanks for the Dead Cancer Cells and Painful Hands and Feet

Since this is my last cycle with my first-line chemo triplet (carboplatin/alimta/avastin), I thought I would give a little more detail about the experience. Check me out, I'm getting nostalgic.

Day 0 (day before infusion): I start the pre-med steroids, and the effects kick in by evening. I feel amped up and my joints start arching, particularly my hips. Plus I get this weird insatiable hunger, with pronounced cravings for meat. I am unable to fall asleep until after 4 am.

Day 1 (infusion): I start with a blood draw to check that my blood work is good enough for the next onslaught of drugs. This goes off without a hitch, in and out with little delay.

Next stop is the oncology department. My oncologist is out of town, so I have a quick check in with the nurse. My blood counts look good so we go ahead with the treatment as planned, and schedule my next CT scan for November 8. I am leaving oncology at 9:15 am and head over to the Infusion Center for my 10 am appointment.

At 12:45 pm (after over 3 hours in the waiting room), they call me in for my infusion. The room is a large U shape with recliners and IV pumps set up around the perimeter, and a nurses' station in the center. I settle into my comfy recliner and ask for warm blankets to wrap up my arms. This helps to make the veins pop out more and hopefully make the IV access easier. Jason pulls up a not-as-comfy chair and goes to get us something to eat from the snack room. The steroid hunger is kicking in big time.

It takes two nurses and three needle sticks, but they finally get an IV going. No shots today, so that is the last poke for me. They start the anti-nausea pre-meds, and by 1:30 they finally get the chemo started. Jason and I get out the iPad and headphones and start watching "Orange is the New Black."

There is some drama when we hear a nurse from the other side of the room call out, "Guys!" Her voice has that blend of urgency and forced calm that speaks volumes. All the nurses run over and we hear an assortment of rapid-fire orders about Benadryl, call a code, history of asthma, allergic reaction. A tense quiet falls over us as all the patients freeze, hoping for the best and knowing that this could be any of us. Several minutes later the situation appears to be under control and everyone goes back to their business.

My final drug infusion wraps up around 3 pm and we head out. I feel okay, just very worn out. And STARVING. I stop at Panera and pick up a sandwich that I take home and proceed to devour. I spend the rest of the evening going back and forth between my bed and couch, plus enjoying a lovely Korean dinner thoughtfully brought over by a friend.

Day 2: I feel generally run down, but not terrible. Tired, vaguely yucky. Thankfully, Aloxi (the anti-nausea drug) works really well for me. I have a couple of nice bruises on my arm from the IV attempts, and some soreness at the infusion site. The tingling and sensitivity is starting in my hands and feet, a neurotoxic side effect of carboplatin. I spend most of the day on the couch or in bed, "lounging out" as Zander would say. There are also the other GI side effects, but in the effort of avoiding TMI, I will just say that Miralax is great, as are those flushable wipes made for potty-training toddlers. And Activia is really helpful. Who knew?

Day 3: Still tired and run down, increasing tingling and sensitivity in my hands and feet. It becomes uncomfortable to open jars and use hot water. The funny mouth taste is starting, a bizarre and rather gross side effect. It tastes like I have some strange after taste from something sour or slightly off. The only things that seem to help are sucking on hard candies or nibbling on snacks. More lounging out.

 

"Resting" on the couch with my girls

Day 4: My mouth tastes gross. Just gross, gross, gross. It makes me want to sip on something all day - which is a good thing overall, I just wish I could get rid of this weird taste. Salty snacks seem to help. The tingling in my hands and feet is pretty constant today. I feel worn out still, but managed to have a short outing for a hair cut. I have a chronic runny nose and itchy eyes, a side effect from the Alimta. Not terrible, it just feels like I have allergies all the time and I go through a LOT of kleenex.

Day 5: I keep thinking I have more energy, but little things tire me out very fast. I feel sort of foggy-minded, I guess it is a mix of the fatigue and "chemobrain," or the impact of having lots of harsh chemicals coursing through my system. I find that it manifests in that I have a harder time multitasking. If the kids are talking to me and the TV is on and the water is running for the dishes, I have a really hard time following all of the sounds. I have to turn off the faucet and look right at the person talking in order to really follow what they are saying. A very strange feeling when I am used to doing a million things at once. I do manage to do some studying and take the online quiz for my Statistics class (I aced the exam! Woo-hoo!). I just need to focus a lot harder than I am used to.

Day 6: Things are improving. The sensitivity in my hands and feet is decreasing, making washing dishes way less painful. I managed to do a bit of vacuuming, did a quick grocery shop, and carved pumpkins with the kids. Still tired, but things are looking up.

Day 7: I am a marathon sleeper (really, if there were a contest I could totally win), but I am starting to feel more like myself. My feet are still a little sensitive, but cozy slippers and socks make them much more comfortable. Time to get back on my exercise routine!

So, there you have it, a glimpse at chemo week. I am very thankful that I am one of the luck ones who is still able to function somewhat normally while on chemo. Now comes the "nadir week," where I feel more and more okay, but my immune system takes a nose dive. Lots of hand washing and Purell!