Fifth Time’s the Charm

Today marks cycle 8 of my every-three-week chemo schedule. I’m tolerating it pretty well, I’m happy to say. The antiemetics work wonders, and I just plan for about a week of being super wiped out, so it is manageable.

Oh, did I mention that I had an allergic reaction to the carboplatin during my fourth infusion? Thankfully it was caught and reversed quickly, so no big deal. But it does mean that I cannot have carboplatin again. I was only scheduled to have 4 rounds of it anyway this time, but it is a little scary knowing that it is out of the arsenal now.

Also, fluid has slowly been building up around my right lung (the good lung) so I had a thoracentesis and they drained a liter of fluid. Sigh. I continue to drain my left lung at home every three days, so the fun goes on.

In some very exciting and hopeful news, my wizard from Colorado told me that he has been growing my cancer cells in his lab and he thinks he knows why my cancer has stopped responding to the TKIs (yay research!!). It seems my cancer has developed a resistance called IGF1R, Insulin Like Growth Factor 1 Receptor. AND there is a TKI that targets this, ceritinib.

Commence the hoop jumping! These drugs aren’t cheap, so step one was getting it approved by insurance (it is approved for ALK, not ROS1) which we did! But the copay was really high, so the hospital helped me apply for a program through the manufacturer. After lots of paperwork, hours on the phone, and shipping delays, I finally got the meds on Monday. The moral of the story for my fellow patients is that there is usually work around these high prices, so don’t give up.

The plan now is to continue on with the chemo in addition to my 5th TKI. While ceritinib worked great for my cells in the lab, there is no guarantee that it will work as well in my body, so the safer route is to keep the chemo going and add the new med.

To recap my years spent on TKIs:

1. Crizotinib = November 2013-December 2017 (4 years and 2 months)
2. Entrectinib = December 2017-October 2018 (11 months)
3. Lorlatinib = November 2018-January 2019 (3 months)
4. TPX-0005 / Repotrectinib = February 2019-July 2020 (18 months)
5. Ceritinib = January 2021-???

Let’s hope that my wizard’s theory is correct, and that ceritinib will give me a nice, long run.

A Reprieve

I had scans following two cycles of chemo and it seems that the medicine is working its magic. The cancer has been knocked back in my lungs and my heart, the new stuff that showed up in my abdomen in July is gone, and sclerotic bone mets have appeared, which indicates that they were hiding out but are now dying. (I guess I also had some broken ribs?!? Who knew.) Much to my surprise, even my brain MRI showed improvement, with mets and edema showing reduction. Whew!

Cancer is a thief that steals by inches and by miles. Sometimes stealing pennies, sometimes pearls.

For the past few months it’s has stolen my breath. It’s startling to look back on how frail I was just a few weeks ago. Jason had to push me in a wheelchair for my first chemo, since I was too weak and short of breath to get there under my own steam. During that time, I couldn’t walk more than a few steps.

And now, thanks to chemo, I can walk again. I can yawn again. I can hold my breath. I can (mostly) take a deep breath.

I still have a very long way to go, but I can feel my lungs slowly getting stronger.

My balance issues have remained, meaning it wasn’t the trial drug causing those. They are likely the result of brain surgery and several bouts of radiation. Which also means there may not be a ton of improvement there, even with effective cancer treatment. Wobbliness may just be part of me now.

Cancer has stolen my gracefulness. It has stolen my handwriting. It took my naïveté years ago.

But chemo has given me back my breath, so I willingly continue my cantankerous partnership with this prickly friend.

I can go for a walk again. I can cook a meal again. I can take my kids to the park again.

I am slowly clawing my way back.

What a Week

A lot happened last week. In a nutshell, I’m out of my clinical trial, and I spent 4 days in the hospital dealing with malignant fluid around my heart. 

I had been doing my monthly clinical trial visits virtually since March, but as things have been getting more worrisome (increasing shortness of breath) my Wizard wanted to do a full evaluation in person. So, I went from extremely careful pandemic behavior to getting on an airplane. I’m very glad I went. I had a full battery of testing, and discovered that I had fluid around my heart (pericardial effusion). My doctor was going to admit me on the spot, but understood that I wanted to come back home first, and felt it was safe to delay to later that day. My beloved family picked me up at the airport and dropped me off at the emergency room. At least I got to spend a few minutes with them. 

Thankfully, the heart issue was not what they considered “emergent” (no need to rush right into a procedure), and they were able to wait until the next day, make a plan, and get me scheduled. And I got a private hospital room, so that was nice. 

They placed a small drain into the pericardial sac and drained out the fluid. I had to stay in the hospital for three days to observe the draining, but it was largely uneventful (thankfully). The next steps are a follow up echocardiogram and then getting scheduled to start chemo. 

It’s funny looking back on how I have changed since I did chemo in 2013. Then, I was much more Season 1 Buffy (“give me something pointy and tell me where the big bad is”) and this time around I’m finding a lot of resonance with Season 6 Buffy (“Life isn’t bliss, life is just this, it’s living”). 

I’m going through the very painful repotrectinib withdrawal, which is certainly impacting my mood. The aches are remarkably similar to the entrectinib withdrawal I went through in 2018, so at least I know what these awful muscle pains are about. 

I’m holding out a lot of hope for my chemo redux. It worked amazingly 7 years ago, and all of my treatments since then have been laser-focused on the ROS1 mutation, so it makes sense to go more broad-spectrum.  

If you have some well-wishes to spare, I will happily accept. This is kind of a lot to absorb, plus pandemic and all. 

I love this song, and I feel like it could be the theme song for 2020. 

“Anger wants a voice, voices wanna sing 

Singers harmonize till they can't hear anything 

I thought that I was free from all that questionin' 

But every time a problem ends, another one begins 

And the stone walls of Harmony Hall bear witness

Anybody with a worried mind could never forgive the sight 

Of wicked snakes inside a place you thought was dignified

I don't wanna live like this, but I don't wanna die.” 

- Vampire Weekend’s “Harmony Hall”

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!

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

Stage IV is No Time to be Timid

I've been rather giddy about my ROS1 mutation news. When I met with my oncologist on Tuesday, she told me that I am the first person at the University of Michigan Cancer Center EVER to test positive for ROS1. She said the technician ran out into the hall screaming when he got the results. The tumor board couldn't stop talking about it. "We finally got a ROS1!"

How cool, I'm Patient #1.

My oncologist wrote my prescription for Xalkori (the brand name for crizotinib), then paused as she handed it to me:

We may run into some problems, because this is considered off-label for ROS1.

Urg, I didn't even think of that. Because the ROS1 group is so small (only about 30 cases), there have been no clinical trials specifically for us. We have tagged along with the ALK mutation trials because, thankfully, the mutations are similar enough that their targeted drugs also work for us. But technically, there are no drugs approved specifically for ROS1. My oncologist assured me that if insurance turns me down, we can appeal directly to Pfizer to get compassionate use of their drug. But all of this will take time.

I asked if I should wait to start the meds until after my scheduled scan on Friday.

Oh, this won't be through insurance by Friday.

Sure enough, when I took the prescription to the Cancer Center pharmacy, they tried to run it and it was declined by my insurance. They will need to get a "prior authorization." This will take several days.

Sigh.

I spend Wednesday hoping to get a phone call from the pharmacy. No luck. So, I go to Pfizer's website and fill out the forms to request the drugs, but notice that the processing time is two weeks. Urg.

I contact the wonderful Bonnie of the Bonnie J. Addario Lung Cancer Foundation. She replies within minutes, and starts working on my behalf. She contacts Dr. Camidge, one of the leading ROS1 researchers, and he advises her what documentation I will need in order to dispute my insurance. (Here is a nice short video of Dr. Camidge discussing ROS1, crizotinib, and the FDA challenges.)

Thursday rolls around, still no word from the pharmacy. I start to get nervous. I would normally be starting chemo on Tuesday, and if we end up needing to go to Pfizer and then wait two weeks for a response . . . this could drag on for ages without me getting any treatment.

So I tweet my frustration.

Tori Tomalia ‏@lil_lytnin
Fighting @BCBSM to get my meds. #ROS1 #xalkori #LCAM2013 #lcsm

Moments later, this appears in my feed:

BCBSM ‏@BCBSM
@lil_lytnin Please email the 800# on the back of your card & contact info to membersupport@bcbsm.com for help getting answers. Thanks. ^GD

Wow, they follow twitter? Incidentally, does anyone know what "^GD" means?

I consider contacting member support, though doubt that they will be able to help me. I decide to first call the Cancer Center pharmacy to see if any progress has been made on my claim. Nope, insurance is refusing it, needs a "prior authorization." The pharmacist said they will work on it and let me know as soon as they know more.

How frustrating that my potentially life-altering medication is being held back by a mess of red tape.

I try to put the girls down for a nap (mostly a failure), I attempt to get some work done (semi-successful), I eat some lunch (success!), and then the phone rings.

It is BCBS of Michigan. They have expedited my claim and approved me for a 6 month supply of Xalkori. They tell me to call my pharmacy and have them re-run the prescription. It will go through now.

!!!!!!!!!!

I call the pharmacist and tell him this.

(Stunned silence) Your insurance called YOU?!? This happens in maybe ... 1 out of 20 cases.

He re-runs the prescription. It goes through. The meds are ready for me.

I tweet a "thank you" about BCBS expediting my claim.

Then I start to feel bad. Had I strong-armed the insurance company by tweeting about them? Had I been inappropriate in airing my frustrations publicly? Should I have just quietly waited and accepted whatever response they gave? Suddenly, the words of a fellow lung cancer warrior ring in my ears: "Stage IV is no time to be timid."

It's true, I am literally fighting for my life.

Tomorrow morning I have a CT scan to see the impact of rounds five and six of chemo (results on Tuesday). I would love to see more shrinkage, and hope for at least stability. I plan to ask for a vanilla/mocha blend for the contrast solution (see my post "Fear" for that story).

Tomorrow night I will start my new adventure with Xalkori. I hope I am one of the lucky ones who show a great response. I plan to stock up on ginger ale and Imodium for what I've heard can be a rough start with this medicine.

I will gladly accept all thoughts, prayers, well-wishes, chanting, etc as I head down this new path. Thank you, as always, for the amazing love and support you have been sending from all over the world. 

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!

Making Small Talk When Your Life is Upside-Down

It is day 4 after chemo (cycle 6), so I am pretty wiped out. My exciting outing for the day was a quick haircut at Great Clips, since we are going to have some family photos taken on Tuesday and I thought I should try to look decent. We have been meaning to get photos done since the girls were born (yes, over 2-1/2 years ago) and we are finally doing it.

I hadn't realized how complicated small talk with strangers can become when tackling a major health issue. My friendly stylist chatted away, as they always do, asking me what I was up to today.

WHAT I THOUGHT: Sleeping, recovering from chemo, trying to eat a lot of calories and keep my fluid intake up.

WHAT I SAID: Oh, I have had a pretty relaxed day. Just taking it easy.

Somehow the conversation came around to what I do, which is a weird topic of conversation for me now, because I am still in grad school, but only taking 1 class, and I am only working very part time. She asked what I was studying, I replied Theater for the Young, and of course she asked what sort of work I would do with that.

WHAT I THOUGHT: I used to know. I wanted to be a professor. I was going to develop arts integration curriculum, and write and direct shows for young people. But who knows now what I am going to do. My priorities have all shifted. The most important thing now is spending time with my family. 

WHAT I SAID: Oh, teaching, working with kids in the arts. Freelance stuff.

As we discussed my haircut, she mentioned that I was last there in March for a trim of my shoulder-length hair (I didn't realize they kept track of that stuff). I explained that I chopped my hair short this summer, and she asked what prompted the drastic move.

WHAT I THOUGHT & WHAT I SAID: Well, actually, I'm on chemo. I cut my hair short because I was expecting it to fall out. It has thinned a lot, but I still have a lot left.

I felt bad, this seemed like a lot to dump on my friendly stylist who just wanted to have a pleasant chat. But she took it in stride and we wrapped up the haircut.

It made me realize how differently I view things now. Life changes when you no longer assume you have an endless string of tomorrows. It's not that I mind talking about all this cancer stuff, it just seems to shake people up a lot and then I feel bad that I have upset them. No one likes my answer when I say the prognosis isn't good. I remain perpetually optimistic, but my situation has radically impacted my thinking. Sometimes I feel like I am in some alternate reality, where future plans are forever unstable and all that really matters is this present time.

And then, I think, this may be how life really works.

Health Kick, or Is It Possible to Get Healthier on Chemo?

On Tuesday I am due to have cycle #6 of this chemo cocktail (carboplatin, avastin, alimta), the second of my "bonus rounds." For some reason, cycle #5 has been incredibly kind to me. Sure, I had lots of the annoying side effects, (a weird taste in my mouth, tingling hands and feet that become incredibly sensitive, plus I got a stye in my eye) but those left after about a week. The fatigue is always rough, but this past week I have felt my energy returning to levels much higher than before I started chemo. The main thing is that I can breathe so much more clearly. 

After I was diagnosed, I remember looking around our backyard, and I noticed that I had placed a lawn chair next to every one of the kids' play areas. I was so short of breath that I could not stand for any length of time to play with them. I didn't go up to Zander's room because I would be so very winded by the time I reached the top of the stairs. In those days, having a shower and walking back to our room was enough to require at least half an hour of bed rest to recover. 

Somewhere over the past few months, that has all started to change. I can now walk around carrying my daughters (one at a time, mind you!). I discovered this quite by accident when Mikaela was fussing and I picked her up purely on instinct and started walking. After a minute or two, I realized that I wasn't puffing for air. That was a wonderful moment. 

My new found ability to breathe has put me on something of a health kick. About 2 weeks ago, we bought this lovely new toy.

Mikaela working out

I decided that, since my lungs actually seem to be working again, I have an obligation to keep them as healthy as possible. I appreciate the ability to breathe so much more than I ever have before.

At first, I struggled to do more than a few minutes on the bike. However, after 2 weeks of dedicated practice, I can go 20 minutes nonstop. It's not so impressive - I have to keep it on the lowest setting, but remembering that it was only a few months ago that I could not climb a flight of stairs, I feel pretty excited.

I have also been drinking protein shakes to help keep me at a 2000+ calorie a day diet. Weight loss is a major problem for cancer patients, both because the cancer steals nutrients, and from chemo related nausea. Thankfully, the anti-nausea meds have been very effective for me, so I have been working to pack on the pounds. I am pleased to say that I have gained back all of the weight I lost, and then some!

Hopefully, Cycle #6 will be relatively tolerable, and I will be able to continue (slowly) improving my fitness level. It's not much, but it makes me feel good to be able to do something to keep myself in good condition. I hope to be in this fight for a very long time. 

Cancerversary

23 years ago today, at age 14, I was diagnosed with osteogenic sarcoma of the right humerus.

It is strange that now I have to refer to that as "the first time I had cancer."

I recall driving to the biopsy early that October morning, when the first fingers of Minnesota winter were really starting to grip the state, covering everything with frost and making the air harsh and brisk. I looked out the window and thought to myself, quite dramatically, "thus begins the winter of my life."

The doctors very strongly suspected that the biopsy would come back positive for cancer, and told me they would be able to tell by looking at the specimen for just a moment under a microscope, so the plan was to keep me under anesthetic and put in my port once they confirmed it was positive. I remember waking up after surgery and feeling for my new port. It was there, so I knew my answer. "Here we go." I fell back into my groggy slumber.

What followed were 11 of the hardest months of my life. I seemed to get every rare complication from the chemo drugs, so much so that at the end of my treatment, one of my oncologists remarked, "When I told you all of the possible side effects, that wasn't meant to be a challenge!" My chemo was all inpatient, with five days in a row of infusion. After every cycle, without fail, my counts would drop dramatically and I would come down with an infection which would keep my in the hospital until it was time for the next chemo cycle. I was so violently ill from the chemo that I was fed via IV for months, and still lost 30 pounds. I spent virtually a whole year in the hospital, a building that was less than two blocks from my home.

I remember arguing passionately on Christmas eve day, begging them to let me go home so that I could wake up in my own bed on Christmas morning. First, they said, I had to prove I could eat and drink. I set to that task with great resolve, and later that afternoon proudly told them that I had kept down half a glass of water and one and a half saltines. At that time, it was a huge accomplishment, and somehow they agreed to let me go home. I spent a lovely 24 hours with my family, opening presents, and having a fairly normal Christmas before checking back into the hospital that night.

Not surprisingly, my second dance with cancer has led me to reflect on that time a lot, and I keep wondering if there are others like me out there who won the battle the first time, then got reenlisted into a whole new fight. At my follow up appointments when I had finished treatment, I used to ask about the other young cancer patients I knew, until one day I was told that two of them had their cancer recur, and one had passed away. I stopped asking after that.

I have only kept in Christmas-card-contact with one of my old cancer buddies, and while I would love to talk to her, I think it would be kind of cruel to call her up and say, "Hey, remember when we went through hell together, then got cured and went on with our lives? Well, it can come back in a whole new form!"

In some ways, I am thankful that I have my first experience to think back on, because I know just how much I can handle (a lot). So far, at least, this hasn't been nearly as terrible as that was. Side effect management has improved by leaps and bounds, and I am currently on a fairly tolerable chemo triplet. I know that things will get a lot harder. But I am also older now and have a lot more life experience. Most importantly, thought, I have three little ones who keep me very grounded in the real world of day-to-day life. They are three small people for whom I would do anything.

Reality Check

I learned today that a young woman just lost her 29 year old husband to stage 4 lung cancer. Three short months from diagnosis to death, he leaves her with two small children and another on the way.

I am speechless.

It is a brutal reminder of just how cruel this disease can be.

And it reminds me to count my blessings. This round of chemo has been remarkably kind to me. I feel quite well right now. I can breathe so much more easily than I could before starting chemo, and I have virtually no pain from where the bone mets are (were?). Today, I was well enough to take a long walk around the neighborhood with my husband and dream about our future endeavors. It was the sort of day where I could almost forget about cancer.

Fear

As I am awaiting the results from my CT scan, I have been trying to think of ways to deal with this fear of the unknown.

I have tried to logic my way out of it, by telling myself that nothing is significantly different before they tell me the results versus after, the only difference is my knowing.
That kind of helps.

I have tried to comfort myself with numbers which, incidentally, is how I had such a wonderful drug-free birth with Zander (keep the mind busy so it cannot address the pain!). Currently, I am trying to quantify my fear of various outcome. If there are between 1 and 2 new mets, then I will feel somewhat fearful. If there are 3 to 5 new mets, then I will feel moderately terrified. If there are greater than 6 new mets, then I will feel very scared.
This has been somewhat helpful.

I would be nice to use a lovely bottle of wine to address the fear, but I am trying to protect my liver so that option is out. I heard from a fellow lung cancer survivor that she pops a Valium to get through the horrible waiting. Doesn't sound like such a bad idea to me!

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While I was in the waiting room for the CT scan, drinking the oral contrast solution, I got into a conversation with two ladies who were also consuming this lovely beverage. In a very thoughtful attempt to make the drink palatable, the nurses mix it with a flavoring syrup. Our site offered banana, vanilla, berry, and mocha. I opted for the berry, which my cohort agreed tastes fine at first, but by the second cup (yes, we have to drink two large cups) is much too sweet. One lady asked the nurse if she could prepare a flight of contrasts so we could sample each. I don't think the nurse found this quite as funny as we did.

Instead, we pooled our knowledge and decided that banana is disgusting, berry is okay, vanilla is rather bland, and mocha is pretty decent, though a bit strong. One woman then came up with the idea to mix mocha and vanilla, which she tried for her second drink and said, "Actually, this is really good!" I know what I am getting next time.

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I guess my sleepless night was for nothing - the results of my scan were good, showing more shrinkage of my main tumor, and stability or shrinkage of the others. 

Now, off to chemo!

Thanks, as always, for all the love and support.

An Exciting Time to Have Cancer

I am realizing that I have been, perhaps, too delicate in describing my health situation. People keep asking me questions that indicate that I need to be more blunt about the current state of affairs. 

So here are the bold facts, no holds barred:

I have Stage 4, metastatic adenocarcinoma, a non-small cell lung cancer (NSCLC). It is incurable, and considered terminal with an average life expectancy of eight months. Since there is no cure, there is no end date to the treatment.  I will continue to have chemo (or other treatments) for the rest of my life. There is no plan to do surgery since the cancer has already spread throughout my body, making removing it from my lung pointless according to current thinking on the subject.

As of my last CT scan, my current chemo regiment appears to be working. This is a great thing, but it is by no means permanent. The tricky thing with cancer is that is can mutate and become resistant to the chemo at any time. 

I am currently on a triplet of chemotherapy drugs: Carboplatin, Pemetrexed (brand name Alimta), and Bevacizumab (brand name Avastin). The standard treatment is to do four rounds with this trio (assuming it continues to work) and then go onto maintenance of Pemetrexed for as long as that keeps working. 

At my last appointment, my oncologist suggested that I do two additional rounds of this powerful trio since it seems to be working and I am tolerating it. I am totally on board with this decision, and actually walked into the appointment armed with a list of arguments to convince her of this approach. I was pleasantly surprised when she suggested it before I had a chance to launch into my pitch.

Let me back up for a moment and clarify what it means for the chemo to "work." There are essentially three possible verdicts from a CT scan.

1. The cancer is shrinking

2. The cancer is stable, meaning neither shrinking nor growing

3. The cancer is progressing, meaning the current tumors are growing and/or there are new metastases. 

My first CT showed verdict #1. Yay! In order to continue on the current line of chemo, you need either verdict #1 or #2. If you get #3, then you need to pursue other options. These take the form of other chemotherapy combinations or clinical trials. 

And that brings me to the title of this post.

I am discovering that a whole lot has changed in the 20+ years since I had treatment for my childhood cancer. Not only do they have MUCH better methods for managing all the terrible side effects of chemo, the whole way of thinking about treatment is undergoing an interesting and exciting shift.

It used to be that the three tools for cancer treatment were to cut it out (surgery), burn it out (radiation), or kill it with poison (chemotherapy). While these three are still used extensively, there are a few new approaches. For example, one of the chemo drugs that I am on, Avastin, is technically not chemo at all, but biologic therapy. Rather than killing the cancer outright, it starves it by preventing it from creating blood vessels to feed the tumors.

Another very exciting treatment is based on finding the driving mutation of the cancer, meaning figuring out what went wrong to make it grow out of control, and stopping that mechanism with a targeted drug. There are two well researched mutations for NSCLC, EGFR and ALK. My cancer does not show either of those mutations, but there are many others being researched currently. If we find my driving mutation and match it with the correct drug, controlling my cancer could involve a daily pill, with fewer side effects than chemo.

The third, and perhaps most innovative line of research involves using the patient's own immune system to track down and kill the cancer. There is a trial for this therapy going on in Karmanos, just down the road in Detroit. My doctor and I discussed at my last appointment that this is a possible option for me if/when the time comes to switch to a new plan of attack. 

So, although the prognosis of my disease is pretty much horrible, I do not feel entirely foolish for remaining perpetually optimistic. With all the changes going on, the statistics are becoming outdated. Also, I am young (the average age at diagnosis is 72) and healthy (I mean, other than the cancer!), which will (hopefully) put me on the good side of the bell curve.

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A few days ago, Mikaela had a follow up appointment with her cardiologist and we learned that the last of her premie issues has resolved. Resolved. Over. All those nightmarish months when we prepared for the worst, not sure if the girls would survive, and if they did what sort of lives they might have. Now, they are simply two happy, healthy, and dare I say adorable little two year olds.

No one knows what the future holds.

I hesitated quite a bit before posting this, knowing that it is a lot if information to digest. But I believe it is best to face the truth, and step boldly forward.

My next scan is on Friday, September 27. We will get the results on October 1, and if things are still working I will begin my next round of chemo that day. Thank you for all the well wishes, prayers, good vibes, FOOD, and endless love and support. I am so fortunate to have so many wonderful people in my life. You are all superheroes.

It's okay, even superheroes get tired sometimes!

Attitude is Everything

When I was in high school, our well-meaning cheerleaders painted the inspirational phrase, "ATTITUDE IS EVERYTHING" on the wall of the lunchroom. While their intentions were good, the execution was poor in that they chose to paint it in our school colors, yellow and purple. They alternated the color with each letter, and unfortunately chose a very light shade of yellow. When painted on the off-white walls, the saying looked like this:

A T T D  I  E E Y H N

I remember staring at it for ages, wondering what this cryptic message could mean.

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I have received a number of beautiful cards and messages from people, many of which have remarked on how I am keeping such a positive attitude through all this. I definitely appreciate the kind words, but I'm not quite sure how else I could proceed. I certainly have my moments where it hits me how totally crappy this all is, but I don't see much point in dwelling on that, since it is pretty hard to function if I just feel sad all the time. 

I'm no fool, I know how terrible the prognosis for stage IV lung cancer is. Shoot, I watch "Breaking Bad," and Walter White is only stage III! However, I have also heard from many people who are still chugging along years after this diagnosis. I plan to be one of them. There is a young woman who is a stage IV lung cancer survivor, and she repeats to herself each evening, "I beat cancer today, and I will beat it again tomorrow." I love the simplicity of that. When the future - everyone's future, really - is a series of question marks, looking at each day as an accomplishment makes it much more manageable. (Check out Emily's blog, she has quite a great story: http://embenkickscancer.wordpress.com/)

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This cycle of chemo was definitely harder than the first. I was really wiped out for the first few days, and it took me a full week before I felt like I could do much of anything. Jason had a rare night out last night, and I was very happy that I was energetic enough to do dinner, baths, and bed with the trio solo. No small feat, as any of you with small children know! Thankfully they all slept well, since I spent the evening recovering on the couch watching TV. It is very strange adjusting to needing 10-12 hours of sleep. 

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Several people have asked how many cycles of chemo I need to do. I have a scan on August 16 to check on how things are going. Hopefully, it will show that the chemo is keeping the cancer in check and ideally shrinking the tumors. I am breathing better than I was before treatment, so I am taking that as a good sign. If the chemo is working, I will have two more cycles then go onto maintenance chemo. That continues, well, for as long as it keeps working. I find it helpful to think about this as a chronic illness, something that I will have to deal with on an ongoing basis. Lots of people have chronic illnesses, this is just a particularly nasty one.

If the scans do not look good, then there are some other chemo drugs we can try, and we will go from there. So, fingers crossed for a good scan on Friday!!!

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All in all, I am enjoying lots of time with my family, and trying not to dwell on things I cannot control. Just remember, when life is getting you down, repeat this helpful phrase: "A T T D  I  E E Y H N."

Summertime, and the livin' is easy....

I love summer. I loved it as a kid, and I love it even more as a mom. The long, lazy days, the ease of going outside to play without bundling up in winter gear, the festivals (especially in Ann Arbor - I think they use anything as an excuse for a festival).

My first chemo went really well. I felt nauseated for the first several days, but the anti-nausea medicine helped quite a bit. As I have told several people, it brought it down to the "pregnant with twins" level, so I was already familiar with that. The fatigue is rough, since I am used to going non-stop all day. So, I guess I am finally learning how to take breaks and slow down a little. 

The second week was my "danger zone" week, since my blood counts (read: immune system) were very low, leaving me susceptible to infections. I stayed home that week, and washed my hands religiously. It reminded me of that month when the girls were in the NICU, and everyone had to be so careful around those tiny babies and their very weak immune systems. Wow, it is like all of that has me very ready to handle this current challenge!

Oh - and I started practicing my Tai Chi every day again. My daily practice used to be one of my favorite things, then I got too busy and stopped. I am very glad to be back at it. It makes me feel more centered and stronger, both physically and mentally.

I am at the tail end of my "recovery week," into which we have tried to distill as much family summer fun as possible. This lovely week has included: bowling, farmer's market, lunch and a movie with Jason (just us!), the Reptile Zoo, coffee with a friend, several park trips, a birthday party for an adorable now 1 year old, bike rides, and the Hands On Museum. 

I have so many thank yous to give out to all the people who have become our support network during this time. Thanks for gift cards (Bobbi Jo, Jenny, and Decky/Christine? - the kids tore open the care package so I don't know for sure who gave us what!), and all the childcare help from my sister Yvette.

AND all the meal help, organized by the multi-talented Meriah: Susan, Emily, Patricia, Jenny, Prab, Jack, Pam, Callie, Amy, Bridgit, Decky, Marion, Wendy, Sarah, Kathy, Megan, Ariel, Karen, Brian, Dee, Trish, Nan, and Wendy. Woah, amazing. And several have brought food more than once!

I am sure I am forgetting people, so thank you to every one for such incredible support. 

Round #2 begins tomorrow. Keep sending all those good thoughts!

Simplicity of Purpose or Life as a Human Incubator

These past few weeks in the hospital have given me a very simplified way of approaching each day. Essentially, my one purpose right now it to keep the girls safe for as long as I possibly can. It is a strange feeling, knowing that I really only have one goal each day. And every morning that I wake up still pregnant, I have completed my goal for the previous day. It kind of reminds me of when I was on chemo (though that was WAAAAY more crappy) in that my one goal then was to get better. Every day that I got through another treatment or got over another infection brought me one step closer to a healthy outcome.

We are at 31.5 weeks now, so every day I feel a tiny bit less terrified. I realized that I had my first hospitalization at the beginning of December, which means that we've been living with this worry/danger/stress constantly hanging over our heads for three months. Yeah, it hasn't been a very fun pregnancy!

Living in the hospital has given me a deeper understanding of what it feels like to be a two-year-old. As I mentioned in the last post, one of the few things I'm allowed to do is walk across the hall to refill my water cup. So when a thoughtful nurse goes and gets a fresh cup of water for me, I kind of feel like stomping my feet and yelling, "I can do it BY MYSELF!" the way a certain two year old I know does. Most of the time I try to jokingly explain that I have permission to go to the water area so I really look forward to it, but it gets tiresome to explain that every 8 or 12 hours at shift change.

On a happier note, this hospitalization has shown me that we really have become part of a community here. I'm not sure when I stopped thinking of myself as being new in town, but somewhere along the way my family developed a nice group of people who have shown their lovely support through this trying time. Thank you to everyone!