lunhs cancer

I have my every-three-month scans coming up on Friday, and I am already a nervous wreck. The week or so leading up to my scans I, like clockwork, come down with a nasty case of PSS: Pre-Scan Syndrome. It mimics all the emotional symptoms of PMS, with irritability, heightened emotions and general crabbiness, and lasts through when I get my scan results. I don�t think scanxiety ever goes away, but as I've gone through more of these I have developed some tricks for trying to deal with the nerves. Here is a list of things that sometimes work for me. 1. Distraction Binge watch episodes of your favorite TV show. Dig into a great book and get lost in the story. Go somewhere fun that you have never been before. Treat yourself to something that will keep your mind busy thinking about anything but those scan results. 2. Loud Music Crank up the radio! Blast 80s music! Belt show tunes! It's hard think about scans while reenacting scenes from Flashdance , and I challenge you to feel anxious...

The heart may freeze or it can burn The pain will ease if I can learn There is no future There is no past Thank God this moment's not the last There's only us There's only this Forget regret � or life is yours to miss. No other road No other way No day but today - Lyrics from"No Day But Today" (from the musical "Rent") Scan time is looming large on the horizon, so in addition to trying to take my own advice (see " 10 Tips for Coping with Scanxiety "), I have been ruminating on the meaning of fear. Why is scan time so scary? First, there are lots of little fears that flit around my mind, such as... I'm scared the IV will hurt. I'm scared the contrast drink will make me throw up. I'm scared that I might have some weird allergic reaction to the injected contrast dye. I'm scared that when they inject the dye and it makes you feel like you wet your pants, that I might actually wet my pants. I'm scared that I migh...

My port had stopped working, so they needed to start an I.V. The first nurse had blown two veins and had called in a replacement who was on her way to blowing a third. In the grand scheme of things, a few needle pokes were nothing. I had been through worse before, and there would be much harder days ahead. But in that moment, it was too much. In that moment, the months of treatment, the endless hospitalization, the constant nausea, and the helplessness were completely overwhelming.  I burst out crying. I can't do this anymore. My sister, who had been sitting in the chair next to my hospital bed, stood up and walked over to me. She cracked a smile. "Remember that day when we were little kids and we were swimming at the lake, playing Jaws?" I stopped crying and looked at her, confused. She went on to recount in exquisite detail a day years earlier when we had been swimming and had gotten our legs stuck in the weeds and muck at the bottom of the lake and I had thought that a...

For those of you who follow my scan/doctor appointment schedule (which is amazingly sweet, by the way) you would be passing the time this weekend patiently waiting for scan results on Tuesday. And you would have been almost as shocked as I was Friday afternoon when my phone rang, and the caller ID showed that it was the cancer center. By the time I answered the phone and heard my oncologist's voice, I was trembling. Why in the world would she be calling me when we had planned to discuss the results at my appointment on Tuesday? She quickly said, "Don't worry, your scans are fine. But we found a small blood clot and would like to be safe and start you on heparin injections. I'm so sorry you will have to give yourself shots." Me: " But my scans are fine?!? Okay, when do I start?" I don't love the idea of twice-daily shots, but I like it a lot better than cancer progression! I went in to the clinic Friday afternoon and learned how to do the L ovenox sho...

You are sitting down to a nice dinner when you hear a knock on the door . That's strange, I wasn't expecting anyone. You open the door a crack to see who it is. He shoves the door all the way open and barges in. It's Cancer, the World's Worst Houseguest. He walks right past you and leaves muddy footprints all over your carpet. You are in shock. You didn't know there was any chance of him coming over. It was the last thing on your mind, but here he is, lounging on your couch like he owns the place. Who is this? What is he doing here? Once the shock wears off, you try to talk to him. How long will he be staying? Why did he pick you? He just shrugs, rolls over and goes to sleep, snoring loudly. You start to question yourself . If only you hadn't left the porch light on, maybe he would have gone right past your house. The neighbors whisper that you never should have bought that welcome mat. And the charming walkway lined with flowers just encouraged him. The visit ...

All is well in scanville! I've just passed my one year mark on the wonder drug Xalkori, and now I can breathe (relatively) easy until my next scan in three months. Speaking of breathing, here is one of my favorite lung cancer infographics.  At 3 pm EST today I will be participating in the WEGO Health Activist Twitter Chat (#hachat), which today is focused on lung cancer. Lung cancer bloggers Linnea Duff (@1111linno) and Samathan Mixon (@mixon_samantha) will also be participating, and my fellow ROS1er Janet Freeman-Daily will be guest hosting. We will be addressing these questions: Q1: Why do you share your lung cancer journey online? What motivates you to write a post? Q2: What kind of info do mbrs of online lung cancer community want? What messages do you try to convey? Q3: On which social media sites do you share lung cancer info? How do you choose what info to share on different sites? Q4: How/where do you find content about lung cancer that you want to share? What makes cont...

"Security is mostly a superstition." - Helen Keller I like reason and facts. I question everything, and always want to see evidence. I think I am a pretty sensible, level-headed person. And yet.... I wear the same socks for each CT scan. I wear my favorite shirt for each appointment where I get scan results. I wear two "charmed" necklaces every day. And I have saved every empty bottle of my cancer drug Xalkori. Saving my first bottle of Xalkori didn't seem so strange, since it was such a momentous occasion when we found my driver mutation and I started taking this magic medicine. And then I kept the second bottle so the first wouldn't feel lonely, and by the time I got the third bottle I couldn't bring myself to throw that one away because the medicine was working so well. So now here we are, a year later, and I have over a dozen bottles cluttering up the shelf. Ridiculous, yes, but that totally irrational part of me thinks that maybe if I get rid of th...

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 t...

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 rea...

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 ...

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. ...

I went Off to See the Wizard , and believe me, Oz is really something. He answered all my questions and explained things I didn't even know I didn't know. And he insisted we take a closer look at my brain. So we did. And the results? I have a brain, and it is unremarkable. Hooray!!! Xalkori is an amazing drug, but its Achilles heel is the brain, since it cannot cross the blood-brain barrier. If one single stray cancer cell makes its way up there, the cancer can flourish in a medicine-free environment. Half of the people whose cancer progresses on Xalkori have their first progression in the brain. My wizard insisted that I have an MRI of the brain, since I have only had head CTs up to this point, which do not reveal the same level of detail. His philosophy is to catch the little buggers when they are tiny to keep ahead of the cancer rather than waiting until they are causing symptoms. Pretty smart, I'd say, but unfortunately not how things are typically done. Hopefully the t...

Eight months ago today I was lying on the couch eating Trader Joe's fish sticks. Those days, I was so short of breath that sitting at the dinner table and eating was a lot of effort, so I took most of my meals on the couch. The phone rang, and I got the terrible news: the biopsy confirmed that I had cancer. Eight months. I am officially at the median survival time predicted by the (most likely outdated) statistics.  What better day than today to dust off Stephen Jay Gould's great essay, " The Median Isn't the Message ," writing that is often circulated among cancer patients, with good reason. He does a great job of explaining why he felt confident that he would outlive his cancer's median survival of eight months (and he did). He reminds himself, and us, that the median tells us 50% of the people with this disease will live longer than that point. The right tail of this graph can stretch out for quite a ways, and based on reports from several lung cancer patie...