The Key to Happiness

My friend and fellow stage IV lung cancer fighter Jessica Rice has had a very rough road throughout her treatment. She is two years into this journey and has been through numerous chemo cocktails, Xalkori, a clinical trial, CyberKnife, and whole brain radiation.

When I found out I had lung cancer, I was desperate to find other young people dealing with this terrible disease. When I came across her blog, I read it from start to finish. I look up to her as a sort of expert who has already tread the path that I am on, someone who can be a beacon in these unknown waters.

I was looking through her "Frog List" (things to do before she croaks) and I noticed that one of her dreams is to see a Cirque show. Suddenly, I had an idea for how I could try to pay back some of what she has offered me.

I contacted the three people I know who have worked with Cirque du Soleil and, being the lovely people that they are, they all replied promptly with thoughts on how to help my friend. Much scheming ensued, and we were able to contact the Artistic Director of La Nouba (the resident show in Orlando's Disney World) who not only granted two free tickets, but also coordinated for Jessica and her fiance to meet some of the cast members.

How cool is that?

The funny thing is how happy this has made me. Being able to help out someone else feels amazing. I have been the beneficiary of so much support since my diagnosis, it feels nice to help someone else.

I saw La Nouba many years ago, and it is a great show. Over a decade later, this scene still brings a huge grin to my face.

Source: Orlando Sentinel

Take a moment and look over her Frog List. Perhaps there is something on there that you can help with. If not, do yourself a favor and help out someone else today. You just might end up feeling great in the process.

World Prematurity Day

I am taking a break from talking about lung cancer to write a post in honor of my amazing daughters. These little fighters came into the world at 32 weeks, after several almost-deliveries (and almost-miscarriages) in the preceding few months. Mikaela pulled the ejection cord, as Jason likes to put it, and they were delivered by emergency c-section (like, SUPER emergency c-section) on March 8, 2011.

I had been in the hospital on bed rest since 28 weeks because of placenta previa. I am very thankful that I was in the hospital that night, since I had a massive bleed and the doctors got me from my room, into the surgery suite, and got both girls out in under 10 minutes.

Man, I just can't do anything the easy way, can I?

The girls spent the next 4 weeks in the NICU, hooked up to tubes and monitors. I remember looking at their tiny arms and wondering how in the world the nurses got an IV into those veins. To this day, when I am getting poked (often repeatedly) to put in an IV, I think back on what my little girls went through when they were too small to understand what was going on. If they endured it, who am I to complain?

Thank you, Mikaela and Autumn, for teaching me how to fight, how to thrive, and how to beat the odds. You are growing into such fabulous little people who keep me laughing and bursting with love everyday. I am so lucky to be your mom.

PS - I really didn't want to talk about cancer stuff in this post, but I would be remiss if I did not mention that I got my scan results and they were stable. No more shrinkage detected, but no growth either. As I explained in An Exciting Time to Have Cancer, stable is one of the good results of a scan. And if you had forgotten that I was waiting for scan results, then just forget about this PS and go back to admiring my wonderful little girls.

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!

-----

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.

-----

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!

Milestones

Today I had the joy of walking our eldest to his first day of kindergarten. As he was getting ready, he told me that he may feel a bit nervous when he gets to school, and asked me if I feel nervous in new places. I love how articulate he is about his feelings. When we got to school he did amazingly well, taking a moment to look around the classroom the telling me he would like to play in the kitchen area. 

It is funny to reflect on how I felt last year when he had his first day of preschool. I had all the typical anxiety about my little guy growing up so fast. This year, I just felt so thankful that I got to participate in this milestone. 

I've been feeling very Emily Webb lately, as we say goodbye to summer and transition into a new season and school year.

"Oh, earth, you're too wonderful for anybody to realize you. Do any human beings ever realize life while they live it? - every, every minute?"

(For the non-theatre geeks among you, Emily Webb is the lead in the play Our Town. While I agree that play is way over produced by high schools, I still think it is pretty beautiful. You should check it out sometime.)

I will leave you with some cute pictures of  Autumn and Mikaela getting ready to spend Labor Day grilling and playing in the yard. I asked them to sit on the couch together so I could take a picture of them, and they started posing. Those two crack me up.

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!

Why Statistics are Stupid

First, let me clarify. I actually kinda love numbers and find them quite beautiful. And I think research is fascinating and the whole scientific process is just neet-o. 

BUT, when it comes to the medical world, talking to a patient about statistics and probability is kind of stupid. There is a 30% likelihood of this outcome, a 2% probability of this, and 73% chance of that. From a patient's perspective, it is a simple binary; either it works or it doesn't. The person who loses a child when there was only a 3% chance of that happening doesn't feel any better. When there is a 99% chance of a positive outcome, it still sucks really bad for the people in that 1%.

For anyone who has lost a loved one in a bizarre accident, I'm sure that they don't feel any better knowing that massive tornados, school shootings, and plane crashes are actually quite rare. It happened to them, and it sucked.

Sorry for the rant. I'm feeling strangely optimistic about starting treatment tomorrow. I probably shouldn't get my hopes up, but I am looking forward to tackling this thing. 

Thanks for all the support, literally from all over the globe. Amazing. 

The Time is Now

I've always had issues with the advice, "live every day as if it were your last." Do you realize how messed up the world would be if everyone did that? If we all knew the world would end tonight at midnight, no one would go to work, people would spend every last cent they had, it would be anarchy - sparklingly beautiful anarchy, with drunken revelry and dancing in the streets . . . maybe that doesn't sound so bad after all. But it would be not be conducive to any sort of modern society.

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Sorry I haven't written for a while. I have been going through a lengthy maze of testing, including genetic testing. The odds of someone getting two unrelated cancers by age 37 are so astronomically low that they were certain there must be an underlying genetic predisposition to cancer, namely Li–Fraumeni syndrome. It is a pretty scary disorder that makes a person very prone to developing any number of cancers. And it is inherited.

The good news (the GREAT news) is that I do not have that syndrome, meaning my kids are not at risk. It was a major relief to hear that. 

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We got some pretty hard news today. It turns out that the cancer has, in fact, spread to several other sites throughout my body. So, the initial radiation/chemo plan is out, since we are no longer dealing with a single tumor. I will instead begin chemo on Monday. They will do two rounds of that, then do more scans to see if the cancer is responding. 

To all those people who have offered good wishes, prayers, and healing vibes, the time is now. Monday morning the battle begins. Get out those lucky rabbit's feet (not so lucky for the rabbit!), bang your drums, light incense, wish on a star, whatever way you know to try and tilt this fight in my favor. 

I'm an anomaly already, so I can surprise them again, right?

Cancer Update (ooh, I'm getting bold about the word!)

Thank you, everyone, for the outpouring of support. It has been just wonderful and I am humbled by the generosity and love from all over the world. I am reminded once again what an amazing community I have around me, both near and far. I am one lucky person. I am trying to reply to everyone, but I apologize for being slow about it. Sometimes this is all just kind of ... a lot.

People are asking for details so here's what I know so far. It is adenocarcinoma of the lung. There are a few lymph nodes in my lung area that are affected, but there is no sign of cancer anywhere else. The treatment will include chemo and surgery, and possibly radiation. I have no idea what caused it, and it is unrelated to the cancer I had when I was 14 (osteogenic sarcoma - bone cancer - in my right humerus). I also have no idea what caused that either, by the way. I'm meeting with the oncologist on Tuesday to lay out the detailed plan, and chemo will most likely start right after that.

As for how I'm feeling, well, I'm all over the place. 

I am ready to fight. I know I am strong, and I can make it through this. Hey, I did it once before, and I am a tougher person now than I was then.

I feel really, really sad that my family has to go through this mess. I hope the girls are too young to remember much of it. Poor Zander has taken me to the ER more times than anyone should have to experience.

I am totally dumbfounded that this is happening again, and I wish I could point to a cause. Did I get struck by lightening twice? Maybe I should buy a lottery ticket.

And there is a part of me, deep down, that is absolutely, completely, paralyzingly terrified. Terrified of possible outcomes that I don't even want to give voice to. Terrified of walking back into hell, but this time my eyes are wide open with the knowledge of just how dark this road can get.

Is it better to know? 

A lot has changed in the 20+ years since I had chemo as a kid. I understand that adult chemo is quite different than childhood chemo, and that some adults continue to live fairly normal lives during treatment, so who knows how all this will play out. 

I keep thinking about 14 year old me. Then, I was so upset to lose my hair. Now, that is such a minor concern it seems trivial. Then, I was so scared of hospitals and needle pokes that I thought I would rather die than go through that. Now, I will walk willingly into any fire, just let me live.

For the record, I still don't like needles.

The Plural of Apocalypse

I lead a pretty golden life. I have an amazing husband who balances out all my quirks perfectly, I have three wonderful and sweet kids, things in the school/career realm are coming along well with all sorts of exciting projects and positive response, my parents and siblings are each incredible individuals and make up a pretty stellar family. As I said to Jason, "I guess there had to be some yang to balance out all this yin."

"Yeah, but this is some pretty f&$!ed up yang!"

Like I said, we are a great match.

...............

So I have cancer. Again. Pretty mind boggling. And it is totally unrelated to the cancer I had as a kid. I keep thinking I'm being Punked.

But, so it goes. The doctors are working on a plan of attack. Running more tests. Gathering information. 

Preparing for battle.

I feel like Buffy. Give me something pointy and tell me where the Big Bad is. I just never knew I would need to learn to plural of apocalypse.

Final Day with Three Under Three

Tomorrow little Z will turn three years old. In keeping with tradition, I made him a birthday hat. As I had hoped, he designed it himself this year. Unfortunately, he hates to wear it. I can hardly blame him - it is really heavy. He wanted a field with horses, cows, a farmer and a fence, and ants. He also requested that the characters on the hat be removable so that he could play with them. His wish was my command. But it made for a very big hat.

Birthday hat recap:

Birthday party prep:

As my eldest reaches his next birthday, my membership in the "three under three" club with expire. It has been fun! That is, if by 'fun' you mean exhausting. ;)

My charming little kiddos.

Assorted thoughts on twins and more

As the shock of raising two babies at once (with an almost 3 year old in the mix, too) is wearing off, I am starting to see a lot of wonderful things about having twins.

Autumn

It seems no matter how we place the girls in their crib, the wriggle wriggle wriggle until their heads are touching and they are holding hands.

Autumn, Mikaela

It reminds me of their first night in this world. See, in the womb they had been positioned head to head, with the top of Mikaela's head touching the side of Autumn's. Their first night in their incubators, Mikaela, tiny as she was, managed to scoot all the way up to the top while Autumn wriggled all the way to the side. I think they were trying to find each other.

Mikaela

I walked into their room the other day to find them chattering to each other in their crib. So adorable. And they both giggle in their sleep! What's up with that? Z did it too. Quite wonderful.

Mikaela

I am getting excited about going back to school in the fall and starting work on some creative projects coming up. I'm not sure how it is going to feel juggling work and the newly-enlarged family, and I get little pangs of sadness to think that I might miss out of those great moments that the kids have. I was complaining to Jason that it is hard having both a family and work that I love. Then I paused and we looked at each other. He said, "Isn't that exactly what we have been trying to create?" Oh, yeah. I guess I am actually incredibly lucky. Nice to have it back in perspective.

The first time Z saw one of his sisters spit up, he recoiled in disgust (which is particularly funny to those of you who recall how much he used to spit up). Then just the other day, his sister spat up and he casually got a kleenex and cleaned it up. Jealousy issues and all, he is still a pretty great kid.

So he does alright most of the time, but when the girls get particularly needy, Z kinda falls apart. It reminds me of this idea I had years ago of doing a variety show lit entirely by the audience. Upon entry to the theater, each audience member would receive a miner-style helmet with a light. There would be several things happening on the stage at once, so whatever grabbed the attention would be lit, and everything else would go dark. I realized it would probably just dissolve into a bunch of attention-getting tricks. This is pretty much what happens to Z. "Oh, the girls are crying? Well . . . look at me! I just dumped out all my legos! Still nursing? Um . . . then I will dump a water bottle on the couch. Did you see that, Mommy? Look at me! Pay attention to me! Mommy! Mommymommymommymommymommy!!!" Totally transparent, totally understandable, and totally exhausting.

The world's cutest triceratops

The jealousy issues we are experiencing are basically the typical new baby problems that every older sibling has, only more so because, well, two babies. Plus we cannot go anywhere without attracting at least a few gawkers. While I am the first person to agree that the girls are gorgeous, these onlookers fail to notice that they have an equally wonderful older brother who stands silently by while people "ooh" and "aah" over his little sisters.

So if you are one of those people who likes to stop someone pushing a twin stroller and comment about the babies, please take a moment to notice if there is an older sibling you are overlooking, and send a little love that way.

Zander sharing his buddies with Autumn

Update

The girls had their monthly weight check, and their weights are now 10 lbs 10 oz for Autumn, and 9 lbs even for Mikaela. They are progressing right along their (premie) growth curves, so all looks well. Nice work, girls! I guess my high fat diet is paying off. Bring on the ice cream!

I am reading Entwined Lives: Twins and What They Tell Us About Human Behavior, and I just learned that if the girls grow up and have babies, these children will be genetic half-siblings because, at the genetic level, Autumn and Mikaela are the same person. HOW BIZARRE IS THAT?!?








I gave Zander the task of rinsing out an empty dish soap bottle. An hour later, the bottle was clean, and he and the kitchen were soaked. How great to be two!

The results are in....

In what is both the strangest and cooled birth gift I've ever received, my sister bought a DNA test for the girls so we can determine what sort of twins they are.

(drumroll please)

They are identical! I had a feeling they were, though the size difference makes them fairly easy to tell apart. Old pictures of Autumn look like Mikaela, so I guess Autumn gives us a sneak peak of how Mikaela will look in a few weeks. I wonder if their sizes will even out as they grow up.