Which is more annoying?

Coughing or listening to someone cough? It's definitely annoying to have but maybe more annoying to listen to.

Is it the season for coughs? I’m sure many of you are walking around with allergies, coughing, or even sick given the change of seasons. For me, it’s just an eerie reminder of what life was like 3 years ago.

What if it is the cancer gaining ground? What will we do then? We haven’t even given Tarceva a real chance to work. What if it is Tarceva related? What if the drug is irritating something in my airway? What if it’s just another cold?

We are trying not to worry about it, but that is easier said than done. Meg has never gone through this before and I know it's tough for her. I can’t always remember the specifics of whether or not it’s the same or different than 3 years ago. Anyways, let's just stop worrying about the what if's for one day. I’ve emailed my doctor. We’ll see what he wants to do…

A Kiss is just a Kiss, A Sigh is just a Sigh....

but when is a cough just a cough?

That is the question we've been dealing with this week. Dan had a tickle in his throat last week, which has turned into a cough. For most people, you'd attribute it to a cold or virus caused be the change in seasons. Unfortunately for Dan, it's not that easy. It's an eerie reminder of the symptoms leading to his initial diagnosis.

So we are watching and waiting. I am actually hovering, keeping one ear out for anything that sounds better or worse. Dan sleeps solidly through the night, and otherwise seems pretty good. He went to yoga last night, and felt good. We both could use a lot more sleep, though! I think it's just a cold, and am even trying to will myself to cough as well to prove myself right. Whatever it is, we just want it to go away! Now!

We will see what develops over the next few days, and if necessary, make an apointment to see the doctor next week. So, as you go about your weekend, please send positive thoughts that this cough will move on.

Otherwise, Dan is doing well with the Tarceva. He upped his dosage once, and no rash resulted. He will up it again over the next coming days.

Here is a picture of Dan at his recent visit to Senator Mikulski's office. Thanks to Kay from the Lung Cancer Alliance for sending it!

What have you done today to make you feel proud?

I was diagnosed with cancer after my first of two years in grad school. Going back to school was not a problem for me. I was surrounded by friends, coaching golf, and studying to receive a MBA in finance. While times were tough that year, I tried to have a normal life and enjoyed it. After a week, a month, and even a year, it had always been hard for me to find the silver lining with my cancer diagnosis. People asked me all the time, “How has it changed you? What have you learned?” To be honest, I never knew how to answer that. I was pretty happy-go-lucky BC (before cancer). I was thankful for my family, friends, and for the life that I had. I felt that I cherished the small things, that I stopped to smell the roses (or fresh cut grass on the 18th tee) that I made the best of each situation, and all that other cliché stuff. As for change after cancer, I was still the Dan that I knew, at least for the first 12 months after cancer.

With the season premiere of the Biggest Loser, I couldn’t help but to pose the question again? How have I changed? What has made me feel proud? Meghan and I love the show. Watching the contestants lose 5, 10, 15, 20 pounds in one week is incredible (and borderline ridiculous). The show inspires, motivates, empowers, and enables Americans not just to lose weight, but change their lives.

Looking back at my last semester of grad school, I found the silver lining. It was the realization that I didn’t want to be in finance or work 80 hrs a week on Wall Street. The past 2+ years have been a blessing working for NCCS. After cancer, I can’t say that I’ve changed physically, spiritually, etc. but I’ve definitely changed perspectives. Someone who has cancer thinks about cancer everyday. I knew during the last semester of school, that if I’m going to think about cancer everyday, I might as well be doing something positive about it. Beyond the foundation, the scholarships, and the other survivors I’ve come across, I’m lucky to have found such a great organization to work for. For those of you that may not be able to say that about their job, what have you done today to make you feel proud? What have you done to be a better father? Mother? Husband? Wife? Son? Daughter? Co-worker? Friend? If you know you need to change, do it today. Don’t wait until tomorrow, next week, next month, next whatever. Tomorrow is today.

“You could be so many people, if you make that break for freedom… “

Rules of the Game

If I try to find the silver lining with cancer, is that most of the rules of my old, "normal" world no longer apply. I always had the attitude that you should prepare yourself for any situation. You put your head down, power through and keep to yourself. Usually this often verged on preparing for the worst. With cancer, I've learned that this is not a healthy way to go about the daily routine. Nor is it much fun.

There is no way you can prepare yourself for the raw emotions that hit you- both the joy and the fear. I've had to learn to go with the flow a lot more. To try and acknowledge the down times, but move on as quickly as possible. To focus on the things I can change or work towards, as opposed to preparing for things that may not happen. Since Dan has been so involved in the cancer community, it has been easy for me to join in his foundation and advocacy work. So when the bad days come, I have an immediate outlet to do something positive about cancer.

For some people, like me, cancer provides a license to speak and express things that most wouldn't normally say. Cancer allows you to take the muzzle off- an excuse to shake things up. I know this isn't the case for everyone, and I can certainly understand how scary and uncomfortable it can be to acknowledge your fears, let alone speak them, and certainly not write about them for the world to see! I respect that some people who have had cancer touch their lives aren't able to share the hard times. Trust me, I'd give anything NOT to write this blog. The old me would never have done it!.

The rules of my old life no longer apply. But those rules were pretty stupid anyways. No more super-preparedness... better to love with reckless abandon and see where it takes me.

Capitol Hill

When I first started working for the National Coalition for Cancer Survivorship, I was not exactly familiar with the term "grassroots advocacy." The word advocacy just seemed so exclusive and intimidating. I thought the only way I could be a part of the movement was to join some club or group, but little did I know I had been an advocate since my diagnosis over 3 years ago.

After I was diagnosed with cancer at the age of 22, it was my family and my sisters that taught me to speak up and ask my doctor questions about my treatments, side effects, and medications. They taught me to be proactive, involved, and educated. Looking back over those 3 years, I now realize that I was advocating for myself.

Advocacy, however, can take on multiple levels and forms. Sending letters and writing to your Congressman is advocacy for others at the federal level. For the 23 of you from Maryland that sent letters, you are now advocates - thank you!!!

Even though most of you wrote the letters on behalf of me and my fight, it’s really for the 200,000 people diagnosed with Lung Cancer this year and every year. Of those 200,000 people this year alone, about 15% or 30,000 of them will have never smoked. They never brought it upon themselves. Unfortunately, for some they never were even given a chance as most lung cancer diagnosis are late stage. Unless we do something, unless we change the perception about lung cancer, unless we rally to increase funding, and unless we advocate at the federal level, the statistics will not change.

Lung cancer is given the nickname the “invisible disease” or the “silent killer” because as Meghan said in her previous post, “There are no survivors to hold walks & events, only the loved ones left behind after cancer rips their world apart.” I went into Senator Mikulski’s office with a few other advocates and the Lung Cancer Alliance Staff (we only met with a Health staffer and not Mikulski herself). I proudly wore a bright yellow t-shirt that said “LUNG CANCER SUCKS” and had my bright yellow folder with all of your letters close to my side. (They took pictures so I’ll send it when it comes through).

I told Mona, the health staffer, my story and said, “I’m here. I’m alive and I’m living with lung cancer. I told her I was 26 and engaged. I told her I wanted to get married, have a family, and live until I’m 74, but that Senator Mikulski needs to approve the bill. She needs to approve the bill, appropriate the funding for lung cancer, and champion the cause to all of the other Senators. As Meghan pointed out in her letter, Senator Mikulski has on her website, “I came to Congress to change and save lives.” Well lung cancer is the leading cause of cancer deaths in the US, 1 in every 3 cancer deaths, so let’s hold her to her word.

I’m not exactly sure how a bill becomes a law, but you can brush up on how the legislative process works via the old Schoolhouse Rock video here:
http://www.canceradvocacy.org/get-involved/educate/manual.html

Thank you to those 23 people from Maryland that sent the letters. The staffer was very eager to get her hands on the yellow folder which I scribed in big black marker “Lung Cancer Bill.” If you are not from Maryland and want to send one to your representative, please visit this link. It really takes 2 seconds.
http://capwiz.com/lungcanceralliance/home/

Legislation sometimes can take years to get passed. However, today was a start. Even though we only spent 20 minutes with the staffer, I’m hopeful my story, my bright yellow t-shirt, and the heartfelt letters will leave an unmistakable mark etched in her memory. Today, myself and the 3 other lung cancer advocates took a small step for man…..we just need Senator Barbara Mikulski and all our other representatives to take a giant leap for mankind. I leave you with this quote:

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”
- Margaret Mead
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It's Not About the Bike

As many of you have probably heard, Lance Armstrong is returning to professional cycling to compete in the 2009 Tour de France. I couldn't be more excited. Here is his videoblog on the LAF site http://livestrongblog.org/2008/09/09/statement-by-lance-armstrong-regarding-global-cancer-fight-and-his-return-to-professional-cycling/

For those that didn't know me when I was younger, I was pretty obsessed with Michael Jordan. I changed my number for basketball and lacrosse from my favorite number (11) to 23. In college, when other girls had pictures of hot models on their walls, I had MJ's posters plastered all over mine. I remember watching him play, and thinking that if I could be 1/10 as good as anything in life as Jordan was at basketball, I'd be sucessful. Fast forward to his retirement, return, retirement, stint with the Wizards as both a player and in the front office...

When an athlete returns to a sport after retiring, you usually cringe- our once proud heroes just can't let go & move on (sorry MJ). But Lance chose to come back not for the money, but to raise global awareness for cancer. What other athlete of his calibur has made a greater contribution to society?

When you are in a fight for your life, when you're facing impossible odds, all you want is to know that there is someone out there who knows what you're going through, and beat it. You need HOPE. It's not just that Lance beat cancer, but that moreseo that he has connected people who otherwise were going at it alone. Now that the yellow LIVESTRONG wristbands are no longer a fashion accessory, they now serve as the uniform of the community that LAF & Lance have created- the silent reminder between strangers that they are not alone in their fight. A single yellow band- connecting and inspiring others.

So we're excited to watch Lance over this next year. Maybe we'll have to go to Paris to see him take home his 8th Tours de France (or is Tour de Frances).

Wedding Season

Planning a wedding is definitely overwhelming. There is so much to think about, websites to look out, and styles to glance at. The next two weekends, Meg and I will be off to our friends’ weddings. But on Sunday, we did something surprisingly fun and unexpected, which is probably a good thing. We went to Crate & Barrel to register for OUR wedding. It wasn’t planned on our end, but was definitely planned on Crate & Barrel’s end. Meg was surfing the web during the torrential downpour on Saturday as Tropical Storm Hanna rolled through and saw an ad that the store was closed to the public from 9-11am for wedding registrants. I was dreading the two hours of shopping and even complaining Saturday night and in the car Sunday morning, but I must say Crate & Barrel made the experience easier and better than expected.

First and foremost, there is no way you can pick out your wedding registry items in TWO HOURS! It’s overwhelming. Meg was not prepared like her usual self, thank God, because you literally could spend 2 full days in the 3-level store and still not be finished. Second, I’m shocked by the prices. Who knew a fork (a single fork) cost $10 ($50 for a 5 piece set), a plain old white serving platter……$92. Then there are the “everyday” serving platters (which I happily scanned a rustic wood looking piece) vs. the fancy host platters for parties which Meghan happily beamed the bar code using our handheld device. The good news is that the store provides you with “necessary” items or checklist you need to register for. Notice I put that word in quotations because is it really necessary? Silverware (8-12 pieces) – check. Napkins and linens – check. Wine goblets – check. Everyday drinking glasses – check. (you mean the waeger cup glasses aren’t sufficient?). Serving spoons – check. More white serving platters – check. What about the holidays like Halloween and Christmas platters? Do we need a serving platter for all of them? I quickly realized I was out of my league. I went to every food station setup at Crate & Barrel to pass the time. I added a few “man” items when necessary – like the $150 trashcan and $250 leather bench. We left the store around noon. Disappointed. Exhausted. But happy to worry about something other than cancer.

I must say having cancer and planning a wedding at the same time is very hard for Meg and me. It is tough to be brave amidst the fear and uncertainty. However, when there are unfortunate things happening in your life, there’s nothing better than something good to look forward to. While wedding planning is a source of stress for most couples – if not ALL, it is even more so for us. However, on Sunday, I think we held our own. We kept it together. So for now…

Score:
Wedding Planning: 0
Dan & Meg: 1

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