Wednesday, August 20, 2014

Changing my name to NED

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


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

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

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

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

This was my view as I drove off to my PET scan yesterday. 
Such a lovely bunch of well-wishers!

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

And for the punch-in-the-gut portion of this post:
I asked Zander what he wished for when he blew out his birthday candles. 
"I wished that you and Daddy would never be dead." 
A strange kind of boogeyman enters your world when you become a cancer family. I've learned that the thing of nightmares can come from within my own body. We all face the same impermanence and chaos of the world, but a journey like this forces you to come face-to-face with mortality in a way that many others can ignore. I miss that ignorance, and it makes my heart ache to realize that my children will grow up never having known it.

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

Tuesday, August 12, 2014

That's Great It Starts With An Earthquake

I was jolted awake by Michael Stipe serenading me with "It's The End Of The World As We Know It" and immediately remembered my sister telling me she had been listening to that song some 20+ years ago when our mom called to tell her I had been diagnosed with childhood bone cancer.

Really poor song choice for my alarm this morning, a day when I was waiting for scan results.

Two years ago today I had just returned from the AATE conference, where I had met all sorts of impressive folks, the leaders in the field of Theatre for Young Audiences, and had received an award as one of the up-and-comers.

And today I spent the day at the cancer center.

The results of my scans were mixed. The lungs look stable with a bit of shrinkage on the remaining spots (yay!) and the brain scan was clear (big yay!). The questionable area was my kidneys. There might be something suspicious on them, but they consulted with several radiologist and they couldn't agree if they were really seeing anything or not, so I am heading in for a PET scan next week to get a closer look.

They take away was don't panic yet. It might be nothing. I'll be busy celebrating my wonderful son turning 6 this weekend, so I will keep myself occupied with that. It was this same weekend last year that I was waiting for my first scan results after starting chemo, and I got pretty remarkable results on Jason's birthday (which is just 2 days after Zander's). I hope Jason gets another great birthday present this year. And maybe next year let's plan the scans on a different week.


This song has been going through my head, after the terrible news about Robin Williams. (He was my second choice for my Make a Wish when I was a kid, but Winona Ryder agreed - and we had a lovely day.) What a remarkable actor and comedian, and what a terrible loss to us all. My heart aches for his family and those close to him. I sure hope heaven is real, because he is someone I would really like to meet someday (but not for a long time).
The best of times is now.
As for tomorrow,
Well, who knows? Who knows? Who knows?
So hold this moment fast,
And live and love
As hard as you know how.
And make this moment last
Because the best of times is now.

Friday, June 06, 2014

Fighting the Wrong Fight

I've been following musician Zoe Keating's struggles with their insurance company after her husband's recent diagnosis of stage IV lung cancer with mets to the brain, and it occurred to me how many people in my lung cancer family have fought that same battle. When diagnosed with advanced lung cancer - one of the deadliest cancers out there - we should be focusing on fighting for our lives, and enjoying time with loved ones. Instead, so many of us have to expend our energy fighting with insurance companies.

  • Example #1: Zoe Keating's (@zoecello) husband
Zoe has been wonderfully public about this fight, posting images of their bills and transcripts of phone conversations with their insurance company. Thanks to the power of social media, Anthem Blue Cross had agreed to cover his initial hospital stay. Here's hoping they continue to cooperate throughout his treatment.
To Read More:
"Read the fine print"- tumbler post that includes photos of the actual bill with denied charges
"As if this isn't hard enough" - tumbler post with initial denial of the claim, along with media's response

Choice quote: 
"Coverage for the requested service is denied because the service does not meet the criteria for “medical necessity” under your description of benefits."
Not medically necessary to hospitalize someone who cannot breathe? 

Status: Resolved (for now)

In her post, "Insuring the Terminal Patient" Janet explains how her insurance company denied her biopsy when her cancer spread to a new location, and the doctors needed confirmation that it was malignant before they determined the best course of treatment. Thanks to her blog post going viral on twitter, the company decided to pay the claim.

Choice quote:
"… in this case the member is already known to have progressive Stage IV Bronchogenic carcinoma even after therapy. Specifically identifying the histopathology of this right upper lobe lesion is not going to affect long-term health outcomes."
Anyone who has been following current lung cancer research (heck, anyone who has been following my blog) knows that taking a biopsy and examining the tumor can have an enormous impact on the course of treatment and life of the patient.

Status: Resolved
Stage IV NSCLC Survivor: 3 years and counting, taking targeted med Xalkori for her ROS1 mutation, currently NED (No Evidence of Disease).

Blog post "Breaking up with Blue Cross Blue Shield" tells Samantha's infuriating tale of denial by Blue Cross Blue Shield of Atlanta. She was responding remarkably well to the targeted med Tarceva, and had only a portion of her primary tumor left, so her oncologist thought it would be best to radiate that area (with SBRT) to reduce the risk of it spreading. She continues to file appeals, but currently is stuck with a $116,000 bill, despite, as she said in her appeal to BCBS, "Your radiation oncologist AGREED with mine during the peer to peer review.  He agreed the SBRT was the right course of action to save my life."

Choice quote:
“We understand an appeal was requested because your doctor feels this treatment is medically necessary for you. Based on the information we have, the previous coverage decision can’t be changed. The services are considered not medically necessary….”
So the insurance company understands her medical needs better than her oncologist?

Status: Not Resolved
Stage IV NSCLC Survivor: 18 months and counting, taking targeted med Tarceva for her EGFR mutation, currently has no active cancer (thanks to the radiation that BCBS refuses to pay for).

Kim had been on Xalkori for her ALK mutation for over two years when suddenly her insurance company said she owed $7,000 for her refill. In "Boiling Point" she recounts a day of phone calls that finally got them to reverse this and give her the medicine for the normal price.

Status: Resolved
Stage IV NSCLC Survivor: 3 years and counting, currently on a clinical trial of alectinib for her ALK mutation. Her brain mets are shrinking and her lung tumor is stable.

  • Example #5: Me!
You may recall that when I first started on Xalkori, my insurance denied it (I told the story in "Stage IV is No Time to be Timid"). Thanks to blogging and the twitterverse, BCBS called me to let me know they would pay for the medicine. 

Status: Resolved
Stage IV NSCLC Survivor: 1 year and counting, taking Xalkori for ROS1 mutation. 

As you can see, insurance company battles are far from rare. Yes, medical treatment is expensive, but as Zoe points out, 
"Anthem is owned by WellPoint. Did you know Wellpoint CEO Joseph Swedish earned almost $17 million during his first year on the job? Now you know how they can afford to pay him."
$17 million could buy a lot of Xalkori.

Sunday, May 18, 2014

That Time of Year

I love summer in Ann Arbor. The weather finally turns warm, I plan the garden, festival season kicks off, and all my favorite annual events roll around again.

This time of year is now also a minefield of poignant memories.

I remember counting down the days last year until the end of my semester, willing myself to make it through that last final, that last presentation, and that last tour performance. I was not overwhelmed by the workload - it was a lot, but I thrived in that environment - for some reason, though, I was totally and utterly exhausted. I had been fighting off recurring chest colds for months, and I just couldn't get ahead of them. I remember giving my research project presentation and having to stop and catch my breath. Just standing and talking had me winded. I slept for a week after exams, and somehow it didn't feel any better....

Today we drove past Picnic Pops, an annual outdoor festival of local high school and junior high bands, and I said to Jason, "Oh! We went to that last year!" And then the memories flooded back. Getting out of breath walking around, struggling to carry the girls, ordering a big cup of coffee despite the heat because my "asthma" was terrible and I though a big jolt of caffeine might help.

I remember talking to my mom on her birthday and discussing how my doctor might try a course of steroids to try to get this asthma under control.

The awesome neighborhood bash Burgers on Bellwood is coming up soon, and I remember that Jason took the kids by himself last year, because by then I had been diagnosed and I was so short of breath that doing much beyond sitting on the couch was a huge effort. (The lovely hosts sent him home with a plate of food for me.) We both thought about but didn't talk about how he better get used to taking the little ones everywhere by himself.

I remember missing Zander's preschool end-of-year assembly because I was having a brain scan.

And I remember leaving the garden completely untouched, to be covered by the fall leaves, then the winter snow. When it started to melt this year, we stood there staring at it, an image frozen in time that was such an accurate representation of how we felt frozen in those early days. We were in a holding pattern, in crisis mode, just trying to make it through the day, make it through the night without having to go back to the ER.

And now thankfully, amazingly, we are dreaming about the future. Still cautiously and with contingency plans, but dreaming nonetheless.

Every day I breathe, everyday I think, I am alive! And that is something wonderful.

Tuesday, May 06, 2014

Xalkori, a Love Affair

Scan results today, and the verdict is...

...drumroll, please...

More shrinkage! All that is left is a tiny spot in my left lung, 7x13 mm. Amazing!

Thank you Xalkori, thank you Pfizer, thank you researchers for this miracle medicine! I understand why another Xalkori patient made a music video about her love of this drug.

Thank you to all the wonderful people sending their love and support our way. I am truly one lucky gal.

Also, this blog was named one of the best lung cancer blogs of 2014! As I said to my fellow bloggers in the list, let's do it again in 2015.  

Thursday, May 01, 2014

What Are The Odds

I've been reading a book as research for a wonderfully terrifying endeavor Jason and I are working on* and I came across a section that talks about the poor odds of a small business succeeding.
*More on this soon, I promise! There is lots of good stuff a-brewing.

I couldn't help but chuckle.

That's supposed to scare me? You wanna talk to me about long odds? So I did some digging. (Okay, googling.)

For every 10,000 kids in the US, 1 or 2 will be diagnosed with cancer each year.
That's a 0.01-0.02% chance.

Let's narrow it down to osteosarcoma, my childhood cancer. In the US, there are about 5.6 diagnoses per million people each year.
That's a 0.00056% chance.

About 2 out of 10,000 people will be diagnosed with lung cancer before the age of 40.
That's a 0.02% chance.

Now recall that I have a rare driving mutation, ROS1, that occurs in about 1-2% of non-small cell lung cancer.

Then there are the gulp-worthy stats about lung cancer survival times, and I have already (THANKFULLY, CONTINUING TO KNOCK ON WOOD) made it to the good side of the median.

For something more fun, let's consider the odds of having identical twins: 3 in 1,000, or about 0.3% chance.

The odds of all of these things happening to the same person?!?

All of this is to say that when I read that 80% of small businesses fail within a year, I see that 20% are still around a year later! Those are some of the best odds I've dealt with in a while.

I don't mean to be cocky, it's just that odds have continually proven to be meaningless to me. Also, tomorrow is my 3-month scan, so I think the nerves are making me punchy. Fingers crossed for good results on Tuesday! Let's keep beating the odds.

Sunday, April 06, 2014

The Other C Word

This weekend I saw an excellent production of To Kill a Mockingbird (seriously, if you live in the greater Ypsilanti/Ann Arbor area, run, don't walk to get tickets).
It was full of beautiful, powerful moments, but Atticus' lines about courage really jumped out to me and have been bouncing around in my mind ever since he spoke them. He explains that courage is

"knowing you're licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do."

I've often been told how brave I am in this cancer journey (and in my first). That has never made much sense to me, as I'm not doing any of this by choice. I would much rather NOT have cancer, and NOT put my family through all of this. Sure, great life lessons, live in the moment, blah blah blah, but I would really prefer not to have cancer at all. Really. REALLY. Really really for real.

I am, however, surrounded by some very courageous people. Perhaps the most astounding and least acknowledged are the caregivers, the partners, the spouses. They voluntarily attend countless appointments, put up with scanxiety, hold the patient's hand while awaiting daunting test results, and take care of rambunctious munchkins when the patient needs to sleep. (That last one might be specific to me.) None of this is required; it is not their bodies that are resentful hosts to this beast, yet they do it willingly. That is courage.

The other group who knowingly walk into this fray are the doctors and scientists. Sadly, I need to qualify this since I have come across too many that have the - usually unspoken, but not always - belief that people with stage IV cancer are not really worth the trouble and should be sent home to die. Thankfully, there exist some doctors and researchers that dare to dream. I'm talking about the handful who choose not to give up on us, even when the odds of living a long life with metastatic cancer are, well, pretty close to nonexistent. These are the rockstar docs (I've become a bit of a fan girl for some of them). They face hopeless situations with the crazy belief that these people are worth fighting for. They believe that with enough work, seemingly impossible things just might come true. And even if they don't, they will continue to try their damdedest to find a solution.
As Atticus said, 
"You rarely win...

...but sometimes you do."