lunhs cancer

I saw my surgeon on Monday and all systems are go for brain surgery on Thursday, October 4. I�m oscillating between being incredibly nervous and remarkably calm. Acute recovery will be anywhere from 2-5 days in the hospital, and he estimates 4-8 weeks of slowly rebuilding my strength. His calm demeanor is buoying my optimism; he kept saying this is straight forward and he doesn�t anticipate any problems. In the mean time, we have been trying to get everything ready at home, for the family, the kiddos, the business. I�ve been feeling a very literal need to get my house in order to prepare for this event. As a fairly behind-the-scenes person, I feel like most of what I do is make sure things keep moving smoothly - like a player in curling, rushing about sweeping a clear path for that granite stone to get where it needs to be. As the surgery nears and my to-do list gets shorter, the primary thing I need to do is hand over the reins to all the trusted members of my team. A strange and libe...

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...

My daughter shared her cold with me (thanks, Miks) and when you mix a simple cold with a "chronic disease" like metastatic lung cancer, well it pretty much knocks me out. I've spent most of the day lying on the couch. After I picked up Zander from school, I immediately lay back down on the couch without taking off my coat or anything. Zander froze and stared at me lying on the couch and then said, "It makes me feel like your cancer is growing again." I reminded him that I just had scans and the cancer is so small they can barely see it. "I know, but it makes me nervous to see you sick." He was only 4-turning-5 when I was diagnosed and SUPER sick, and he says he doesn't really remember those days, but I think on some level it has stayed with him. Sigh. Also, my apologies that I have neglected this lovely blog for so long. Things are good with my health, the latest MRI showed that the SRS worked super well, so the plan is to keep chugging along with ...

Thanks to my awesome targeted medicine, a pill that I take twice a day, it has been almost two years since I have been on IV chemo. While my scans still look great, my hemoglobin is low so I am having several weeks of iron infusions. I am so out of practice with IV medicine that I had forgotten all the hints I picked up during my time in the chair. I couldn't believe all the newbie mistakes I made, so I am writing down some tips here to help myself and you, my lovely readers. 1) Hydrate Fluids, fluids, fluids. Drink as much as you can the night before and the morning of your infusion. This will make it easier to find a vein for the IV, and it will help to flush the chemo out. I was kicking myself that I forgot about this when I went in for my infusion. After the third failed attempt at starting an IV I realized that the half-glass of apple juice I had had that morning just wasn�t going to cut it. 2) Pass the Salt This goes along with no. 1, but I would always have a salty dinner th...

You feel a lump.A bump. A something-isn't-right. You walk into the doctor's office. Your heart is racing. You can't breathe. You see your future disappearing before your eyes. Clipboard Forms Insurance Blood pressure Temperature Weight Check Check Check I wish my doctor knew check I wish my doctor knew check I wish my doctor knew check What it feels like check to be a patient check to have to be a patient check to have to be patient check White coats Cold hard statistics Medical jargon diagnosis Gobbledy goop prognosis            Protcols Hear me! Standard of care See me! Aggressive Know me! Maintenance Love me! Stable check check check check Know my fear. so scared Take my life in your hands. all control is you I am more than my diagnosis. know my heart You hold all the power. your words swim around my head I wish I was your one and only. please treat me like your one and only You don�t want to give false hope. it�s the only thing ...

(I was a kid in the 80s and thought that was one of the coolest movies I had ever seen.) As my regular readers know, Jason and I have been working toward opening our dream business , Pointless Brewery & Theatre . We are in the middle of a super exciting and nerve-wracking fundraising campaign through Kickstarter . For those of you who aren't familiar with Kickstarter, it is a website that gives artists a platform to get the word out to a large audience about their project, and people can make donations (pledges) to help make this project come to life. The awesome/terrifying thing about Kickstarter is that if you DON'T make your goal, you lose all the pledges. Let me say that again... You lose ALL THE MONEY. So far we have raised over $37,000 and have more than 300 people from around the world supporting our project. All that love feels pretty amazing. Here's the harsh part: we need to hit our $50,000 goal by April 20 or we will lose over $37,000 .  Yikes. Please don...

There is a constant clock ticking in my mind. Tick...tick...tick.... "Living on borrowed time...." I've passed my expiration date. Tick...tick...tick.... The thing that scares me most, that threatens to tear me away from my family lives inside my body. Tick...tick...tick.... One day my luck's gonna run out. Tick...tick...tick.... Ya know what sucks? Having your future torn away from you when you were just digging into your career. When things were looking so bright. Awards rolling in, people taking notice. When you have a house full of small children counting on you. (They're still counting on me.) So what do you do? You dust yourself off, take stock of what you still CAN do, where you still CAN play an important role, what dreams you STILL dare to dream. My cancer is well controlled right now. Right now I have time. Tick...tick...tick... Right now I have time to plan for my family's future. To get things in place to take care of them when I'm gone. (D...

An interview with Mark Maynard, in which I discuss beer, cancer, Yes And, life choices, improv, and facing challenges head on. Pointless Brewery & Theatre to explore the intersection of brewing and improv

There has been a lot of talk lately about the personalized medicine revolution and President Obama's initiative to fund precision medicine. We hear about genetic sequencing and analyzing DNA, but what does all of this mean to a cancer patient? Sit back while I tell you a little story�. In May of 2013 I was diagnosed with stage 4 non-small cell lung cancer at the age of 37. No idea why. Since it had already spread from my lung throughout my body, surgery was not an option. Cue the devastation, the panic, the shock. The plan of action was chemotherapy, and while the side effects were far from fun, I was relieved that at least it was working, and my giant tumor (seriously, it wrapped all around my left lung) was shrinking. I could breathe a little easier . . . literally. But a body can only tolerate harsh chemo for so long before the side effects become too damaging to the other organs. So, what do to next? The cancer was smaller, but not gone, and we needed another treatment to keep ...

WANTED: Someone who will let me speak my mind about this terrible disease, without having to be brave or positive or sun-shiny. Someone who will let me blow off steam and rant, someone who will let me feel negative and speak my fears about what lies ahead.   DESPERATELY SEEKING: Someone who will let me say that I am scared about what might be. That this disease freaks the crap out of me. Someone who will let me not be tough for a few minutes, but break down and cry about my anxieties. I may get some static for this post, but I think that there is too much pressure on cancer patients to stay upbeat and cheerful all the time, dancing through treatments and smiling during scans. "You can beat cancer with a positive attitude!" Bah, if only that were true, I wouldn't have lost so many friends to cancer. On the contrary, it is perfectly natural � even healthy � to allow yourself to imagine various possibilities of what could be. If you have ever watched children play, you...

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 ...

Some of these ingredients may seem hard to find, especially if you are newly diagnosed. But with a little searching (and soul searching), you can create something wonderful to sustain yourself through the hard times. First, you will need three heaping cups of support . This support can come in a variety flavors, and many blend well together. The first cup includes your close circle : spouse, parents, family, friends, relatives, neighbors, coworkers, religious groups, community groups. These people are all around you, and are the first to jump in. Since too much support can spoil the recipe, it helps to use a website like Lotsa Helping Hands , or an organized friend to coordinate your support. The second cup is your cancer people . It begins with the medical staff, such as your doctors, nurses and social workers. I have found it enormously helpful to include the support of other people with cancer, because they know what I am going through both emotionally and physically and can serve ...

Having stage 4, incurable, metastatic, terminal lung cancer (or "eventually terminal" as my cancer buddy says) has made me acutely aware of death in a way I never expected to be at age 38. I walk in the land of the living with the oppressive knowledge of how very close we all are to the land of the dead. I know that right now my cancer is under control, but one day this roller coaster will dip down again. Will it come back up or will it be the final plunge? ~~~ People ask me how I cope, knowing how very uncertain my future is. Learning to cope has been a gradual, ongoing process. First was the shock, a frozen inability to process this new reality . Then there was the grief, the acknowledgement of my lost future, all the things I had just assumed that I would get to do and see. The plans that I had laid crumbled beneath my feet. But I realized that I couldn't stay in that mental space. I felt like I was wasting the time I had left here by focusing on my lost path. So I sto...

Cancer?!? This can't be happening. What did I do to deserve this? Am I being Punked? Is this my fault? This isn't real. Why me? Cancer. The Big C. The malady that once was only spoken about in whispers. The Voldemort of diseases. With so much fear surrounding this diagnosis, is it any wonder we end up asking, " Why me? " Why does a 14 year old vegetarian get bone cancer ? Why does a 37 year old non-smoking mom of three little ones get lung cancer ? Why would both patients be the same person? ~~~ When I was diagnosed with lung cancer, the first person we contacted (after my parents) was my pediatric oncologist . Could this be a very delayed recurrence of my osteosarcoma? Was this caused by treatment for my first cancer? Is there something about ME that explains how I got two cancers before the age of 40? A biopsy answered the first question. No, this was adenocarcinoma of the lung. A totally different cancer than my childhood osteosarcoma. My pediatric oncologist conf...

In an exciting turn of events, I've started blogging for the cancer publication CURE. They publish both a magazine and web content, and I am looking forward to sharing my story with a new audience in the hopes of educating and helping more people who are on a cancer journey. CURE provides C ancer U pdates R esearch & E ducation to patients, caregivers, and people working in the field of oncology. The magazine has recently brought on several bloggers in an effort to give readers a more personal side of the patient experience. I'm very happy to be one of them. I'm still figuring out how I will coordinate blogging in two places, but I think I'll have some posts that are just for you, my awesome readers, and some that are for a larger cancer community on CURE, but I will provide a link to those here on my blog. Full disclosure : CURE pays me a few pennies (literally) for each person who clicks on my articles. So, if you would be so kind, take a moment and click on ...

It is one of the most feared diseases, but what do you really know?

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...

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. ...

Medicine is expensive. Healthcare is expensive. Research is expensive. Life is expensive. Is it worth it? I read an article (thanks to @BrendonStilesMD for tweeting it) which purports that crizotinib (aka Xalkori, aka my life-saving medicine) is not worth the expense.  �Crizotinib Not Cost-Effective, Says Canadian Study� Yes, this is a very expensive medicine (about $10,000/month), and I am grateful to Pfizer's co-pay assistance program which lowered my co-pay from $1,600/month to $10/month.  Perhaps what bothered me even more than the article were some of the comments, left by doctors: "It would be justified if this drug really cures the patient and save a life. After all life cannot be measured in dollars. But it does not cure any cancer at all, merely delaying the inevitable end by a few months or (if the patient is very lucky), one or two years. What right have drug firms to charge such a huge price by pretending that a modest palliation is a cure?" or "O...

I was at the grocery story the other day and caught sight of an acquaintance I hadn't seen for over a year. I started to walk across the store to say hello, when I froze. I realized that she had no idea about my diagnosis, and I would have to decide whether or not to jump into that minefield when she asked how I have been over the past year. So instead I walked the other way. Meeting new people is sometimes a bit awkward for me now, since I never know if or when I should drop the "I have cancer" bomb. I still have my hair, so there is no tell-tale chemo sign. Overall, there is really no external way to tell that I have anything wrong. Yet, lung cancer has become an important part of my identity. There is not a day that goes by where I do not think of it. I have become active in the lung cancer community, and I have made new friendships because of it. It has profoundly affected who I am and how I think about life. So, like it or not, it is part of me. I am not ashamed of h...