Saturday, September 13, 2014

Real Life

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

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

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

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

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

Tuesday, September 02, 2014

6 Easy Ways You Can Help Stop Lung Cancer

I am alive because of research.

This may sound like hyperbole, but when I think back to how very sick I was by the time they finally figured out what was going on, it is not hard to believe. It was only once the chemo started working that I was able to walk around and talk without getting short of breath. When we found my ROS1 mutation, I was able to go on the brand-spankin'-new drug Xalkori. This incredible leap of science is able to specifically target the mutation, and it has gotten me to NED. How freaking amazing is that?!?

Sadly, lung cancer research receives very little funding. In the wake of the impressive IceBucketChallenge, several articles have come out addressing the disparity of funding for diseases. The image below, from "The Diseases We Donate To Aren't Always The Diseases That Kill Us," shows that while breast cancer (pink circle) and prostate cancer (orange circle) are very popular places to donate, the number of deaths caused by these illnesses is relatively small (see the corresponding dots on the right side). Both are nasty diseases and I personally know many who are suffering from or have died from them. What this chart says to me is that we are great at donating to these two causes, and both are now benefiting and have achieved high cure rates.



Noticeably absent from this chart is lung cancer, the #1 cancer killer. Below is another version of the graph, modified to include lung cancer. 


See the tiny white dot at the bottom on the left? Compare that to the white circle on the right. Lung cancer causes more deaths than colon, breast and pancreatic cancers combined. Lung cancer in non-smokers is the #6 cancer killer in the US, and it is on the rise in young women.  

So, when I hear about the cuts in research finding it is not just upsetting, it is terrifying. Without advances in research, I would be dead. There is currently another drug in trials - a new and improved Xalkori - that is in the wings for when Xalkori stops working for me. Support for research is vital for me, it the truest sense of the word.

"But what can I do about this?"

I'm so glad you asked. I have assembled an activism smorgasbord for just that reason.


1. For those who like pampering themselves


    Paint your toe nails purple and email a photo of your purple toes to purpletoes@lungcancerfoundation.org, then tweet and facebook it with #purpletoes. You can get your purple nail polish right from the Lung Cancer Foundation for a $25 donation. Click here for more information.
    The girls and I did this a few months ago

     

    2. For those who like to get political:

       

      The American Lung Association is hosting the Lung Cancer Call-In Day on Thursday, September 4th to ask congress to increase research funding. All you have to do to participate is call your congressperson on Thursday during regular business hours. 
      "But I can't remember who my congressperson is!"
       That's okay, you can look it up easily right here. All you need is your zip code.
      "But I'll never remember to call on Thursday!"
      Click here to request a reminder email to be sent to you Thursday morning. They are making this so easy!
      "But I've never called a politician before. I'm nervous!"
      That's okay, it's going to be my first time calling my congressman, too. Let's all come back here to the comments section of this post after we do it and post what it was like. We can debrief together!

       

      3. For those who like mingling with the stars

         

        Stand Up To Cancer is hosting "the biggest television event of the year" on Friday, September 5th at 8/7 central. And as a flip of the old call-in-to-donate method, in this program the stars will call YOU!

        "Paltrow and Joel Gallen of Tenth Planet Productions will co-executive produce the Sept. 5 broadcast, live from the Dolby Theatre in Los Angeles.  ABC, CBS, FOX and NBC, along with ABC Family, American Forces Network, Bravo, Cooking Channel, Discovery Fit & Health, E!, Encore, Encore Espanol, EPIX, ESPNEWS, FOX Sports 2, FXM, HBO, HBO Latino, ION Television, LMN, Logo TV, MLB Network, National Geographic Channel, Oxygen, Palladia, Pivot, SHOWTIME, Smithsonian Channel, Starz, TNT and VH1 are donating one hour of simultaneous commercial-free primetime for the nationally televised fundraising special on Friday, September 5, to be broadcast live from the Dolby Theatre in Los Angeles. The show will stream live on both Hulu and Yahoo."

        There is already a lot of buzz building on social media about this event, with the hashtag #IStandUpFor.

        Katie Couric favorited a tweet about me!


        4. For those who have a bunch of cash burning a hole in their pocket: 

           

          There are several excellent lung cancer organizations that will generously help you extinguish the flames by accepting that cash!


          5. For those who have just a little bit of cash burning a hole in their ... phone:

             

            Text LUNG to 27722 to make a $10 donation to the Lung Cancer Alliance.
            It's quick and it's easy. Who doesn't love easy advocacy?


            6. For those who like doing silly stuff and putting their mug on social media: 

              Join the #WhipLungCancer campaign. Here is my video:

              "But wait a second, aren't you just jumping on ALS's IceBucket bandwagon?"
              Actually, no. The IceBucketChallenge, in its current incarnation, was started by another lung cancer family  to raise funds and awareness for lung cancer. I don't want to take anything away from ALS; it's a terrible disease and deserves its share of the pie, too. But we are trying to bring some attention back to where it started, with lung cancer, but in a new way. Plus I got to introduce my kids to a whole new food group. Who knew food could be sprayed out of a can?
              ~~~~~

              This weekend I will be in Boston attending the Acquired Resistance Patient Forum, hearing from several of the rockstar docs who are doing the research that is saving my life. I'm really excited to hear what they have to say, plus I will get to meet a bunch of my fellow lung cancer folks in person! I can't wait to get a photo of a room full of people with stage IV lung cancer, who are living well because of targeted meds. Keep that research funding coming!

              Now, don't think that I'm disregarding all the prayers, good vibes, chanting, and more that people have been sending my way. I'm sure all your love and support has played a role in how well I am doing right now. But you know how that old story goes, about the drowned man who went to heaven and yelled at God,
              "I prayed! Why didn't you help me?" 
              God replies,
              "I tried! I sent a log, and then a branch, and then a boat...." 
              Take a look through the activism buffet above and see if there is something in there that appeals to you. If not, share this with a friend. Sadly, many of us know someone touched by lung cancer. Let's help turn this death sentence into a life sentence.
               

              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.