Scan Day

Today's appointment went ok. The chest CT showed that there's growth - but the changes are small. Given how much we went into deciding Tarceva - I'm still going to stick with Tarceva for a few more weeks. We just want to give it enough time to be effective, plus now I'm taking a reasonable dosage that it will have that chance.

The scan also showed some weird glassy or granular looking layer in my lower right lobe. My doctor isn't in town all week, but the nurse practioner and radiologist thought it looked more like a bacteria infection and not the cancer at all. I'll take an antibiotic for two weeks and hopefully that will do the trick. I'm not too worried as experience has told me over the years that scans and tests will sometimes create a few abnormalities that can't be explained. I just hope this will be the solution to the cough!

Meg and I both feel indifferent about the results. Life with cancer is not a sprint, but a marathon. While we want quick solutions or answers to our problem, we just have to stay the course. As someone that was training for a marathon at diagnosis, I know what it takes and that's to just keep moving...

You Have to Take the Weekend Off

We were lucky to spend the weekend catching up with family and friends. It was fantastic to see everyone, and be surprised by friends from far away, as well as spend an extra evening with (most of) our nieces and nephew in the same place! Of course, it all went by too fast and I never feel like I have enough time to have a decent conversation about what is going in other people's lives. I swear, we are very interested everyone else's stories and it feels great to talk about the latest comment from a little niece, our friends' engagements, wedding plans & kids, and football! What a true gift to feel normal for a little while. A huge "thank you" to our families (especially my parents) and friends- it was a big boost for us!

Juggling the cancer world takes a lot of effort. As hard as you try, cancer can alienate you from the real world some days. There are pros and cons- ceasing to care about mundane things removes some stresses but then leaves more time to think about bigger issues. Blogging helps keep people updated, but also becomes the primary form of communication for some, and most of that communication is centered around cancer. You feel a responsibility to educate people, but then find yourself wanting deperately for people to see you as just a normal couple. So this weekend was a good reminder to take the weekend off from cancer, and I think it came at the right time.

We jump back in tomorrow morning with a visit to the doctor for a chest CT. Dan's cough has persisted. And I swear everytime I think to myself that he sounds a lot better, he coughs! No use in theorizing what might be going on, we'll just pray that whatever it is can be resolved. We ask that you all do the same!

TGIF

Thank God it’s Friday! It’s been a long week. The cough is still ever present and I know it’s wearing on me. My only saving grace thus far has been sipping on tea and good ole cough drops. I finally picked up a prescription yesterday so we will see if that helps.

I’m looking forward to the weekend. My nephew is being baptized on Saturday. Then, we’ve got a little soiree for Meg and me at Meg’s parents that night. Let’s hope the rain holds off!

On Sunday night, we will be having a slumber party with my sister Patrice and her two nieces. The oldest one is 2 ½ and a bundle of joy. (Not to say my other nieces or nephew aren’t a bundle of joy – it’s just a little different once they start walking & talking). I asked my sister the other day what it was like talking to a 2 year old. My limited experience thinks you can't really reason with them, you can't level with them, you just let them run around the house and go off on a three-minute string of pure gibberish. Why can't I be a kid again!

For me, the joy of hanging out with little kids is that they don’t know you have cancer. They will talk to you and ask you a hundred questions and the “c” word will never come up. You can’t put a price tag on that…

Always Be Prepared

First off, Dan still has the cough but is feeling ok otherwise. Other than being bummed that it isn't gone yet, there isn't much else to report at the moment. We'll go in next week for a chest CT to see if there is anything we need to be concerned about. Until then, we just keep keeping on.

This week, we ran into a bit of delay with the insurance company when we went to have Dan's prescription re-filled. Although it has since worked itself out, it did remind me that even those like us who are super diligent about insurance can run into roadblocks. And how important it is to make sure you have the most comprehensive and flexible insurance possible. The last thing you want is to find your self with limited options because you wanted to save $20 a paycheck. The funny thing about insurance is that you really don't know how much you need it until... well, you need it! And I say this from personal experience. I have my own chronic thyroid condition (no big deal- just take a pill every day). It took me 4 separate doctors to get the right diagnosis and treatment. It was a wake up call to me that someone else ultimately decided what was covered and what doctor I could see. You can bet I upgraded my insurance coverage the next year!

Dan and I say this all the time when it comes to managing your heath- when you apply to college, you pour over catalogues, slave over essays & visit many schools before selecting the best fit. Yet, when it comes to insurance or choosing a doctor, many people take the first one that is offered. I think you can recover from a bad college choice, but why would you want to gamble with your health?

On a side note, it actually costs me more out of pocket to get my daily thyroid medication than it does for Dan to get his cancer meds which cost 10x more in total. Go figure.

On a second side note, when we went to pick up the meds at our local drug store, the cashier asked if we wanted to use bonus bucks for the prescription. Obviously the guy had no idea he was handing over thousands of dollars of cancer drugs. It gave us a good chuckle- bonus bucks for cancer drugs. We should get a million of them!!!

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
_

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

_

Stand Up to Cancer in your own way

Many of you may have heard that there is telethon being aired tonight on all three broadcast networks to raise funds for cancer research- Stand Up to Cancer.

You don't have to donate money to make a difference in the cancer battle. You can also exercise your rights as a voter and concerned citizen.

Next week, Dan is going to visit Senator Mikulski's office (D-MD) to encourage her support of S. 3187, The Lung Cancer Mortality Reduction Act of 2008. This bill would encourage lung cancer research, establishment of early detection screenings & create a Congressional Oversight Board to specifically target mproving survival statistics for lung cancer.

You may be able to help him during his visit.

Many people have asked us what they can do for us over the past few months. We've been thinking about how to use our blog to not only get the support we need, but also to educate others and try to make a difference in the continued fight against cancer. But we've struggled with how to let people help us, mostly because we are doing so well at the moment. And we've struggled with how to educate without coming off preachy. But we now have the opportunity to both ask for help & further cancer research at the same time.

Many of you may not know of the bleak statistics associated with lung cancer, which makes our fight that more difficult:

- Lung cancer is the leading cause of cancer deaths in the US in every ethnic group... 1 in every 3 cancer deaths
- Over 160,000 Americans will die this year alone from lung cancer. It will kill more than three times as many men as prostate cancer and nearly twice as many women as breast cancer
- Most people with lung cancer are diagnosed to late that they die within the first year


- Most people attribute lung cancer to smokers. However, all patients are stigmatized whether they smoked or not
- Over 60% of new patients are former smokers or people who never smoked at all
- 15% of people who get lung cancer have never smoked, like Dan or our friend Oliver
- One in five women being diagnosed now with lung cancer have never smoked

Despite these statistics, lung cancer research receives only 5% of cancer research dollars.

We need help raising awareness about lung cancer and elevating it to the proper levels so people like Dan or maybe even someone like me will have the best chance of beating the disease. It's not a disease that affects heavy smokers. It affects non-smokers, those who quite decades ago & those who never thought they fit the definition of a smoker.

And according to the medical definition, there is no such thing as a social smoker. A non-smoker is considered someone who has smoked 100 cigarettes or less. For those of us that used to enjoy a cigarette with our beers, those smokes add up pretty quickly. I am now worried that these decisions will come back to haunt me and many people like me who weren't fully educated.

Why isn't there more focus on lung cancer? Most assume it's because people bring the disease on themselves because they smoke. That is the reaction I get 100% of the time when I tell people what type of cancer Dan has- did he smoke? Simply not true.

And why aren't more people speaking out about lung cancer? Because most people who contract the disease die within the first year. There are no survivors to hold walks & events, only the loved ones left behind after cancer rips their world apart.

So when Dan goes to the Senator's office to meet with her staff next week, I am going to give him a letter to take with him. I want her to support this legislation, and any legislation that will end cancer for everyone. I want her to know about our life and why we need to focus more research dollars on lung cancer- so Dan can be here for a long time & we can prevent others from ever having to see the things we've seen.

This is where you can help. If you're a Maryland resident & would like to write a letter for Dan to deliver to Senator Mikulski, please email me at megrodgers11@yahoo.com and I will give you the form letter and our address.

I hope we can give Dan at least 10 letters. It's a small start, but it's important to raise this issue to our lawmakers. Many of them need more education with respect to lung cancer. And you help won't cost you more than 10 minutes of your time.

For more information on S. 3187, The Lung Cancer Mortality Reduction Act of 2008 visit
the Lung Cancer Alliance at http://www.lungcanceralliance.org/Senator_Stabenow_CoSponsor_PressRelease_8_11_08.html

Tarceva

So far, so good. I started taking Tarceva (oral chemotherapy pill) on Sunday. I haven’t noticed any changes yet. A rash, if any at this dose, will come 7-10 days after you start. Since I am only taking 25mg, I’m not anticipating one to develop. If a rash were to surface, I’m guessing one would come about a week or two after I start 50mg a day. Again, the normal dosage is 150mg. Tarceva does not have some of the side effects of traditional chemotherapy, such as low white blood cells or hair loss. Really the only thing to watch out for is the rash and diarrhea.

I’m hoping and praying that Tarceva will do the trick. The odds are not in my favor, but have they ever been in my favor? I’ve beaten all the odds so far. Since my case is so unique, I’ve just thrown most statistics out the window. The reason why some people are more or less likely to respond to Tarceva depends on a specific genetic mutation. I do not have any genetic mutations which in the long run are probably a good thing. However, in the short term and with respect to Tarceva, the drug actually works a little better with those that do have a mutation. Why am I still taking it you ask? Well, 20-25% of people like me (no genetic mutations) still respond. I feel very healthy right now and it’s time to take that chance. So keep the prayers and support coming. Meg and I love all your comments. Even if we can’t respond all the time, know that we read them and appreciate them. We are both selfless people, so we want to know what you are doing. Don’t be shy. What did you do over the holiday weekend? What are doing this week? Ok – off to watch Project Runway.

Summer Photos

Thought you'd enjoy a few photos of the summer as we ease into fall. Dan was able to start Tarceva over the weekend. He is starting a low dose and working his way up. He is feeling good so far, but the real test will be in a week or so when the dosage ramps up.

Right is a picture of our new BFF Nicole Ritchie. OK, so this is from the spring but it's still pretty funny. We ran into her in Starbuck's in Annapolis, MD. And yes, she is tiny!



Left- One of four ballparks we visited this season. Wrigley is my second favorite place to see a game after Fenway, which we were at for Opening Day. We also saw the Rockies & the Nats (and Dan represented for the O's/Sox game in Baltimore while I was stuck at work).










Right- Dan & Chris Spielman at the Livestrong Summit. Chris is an Ohio State alum & played in the NFL for the Lions. He took off an entire season in 1998 when his wife Stefanie was diagnosed with breast cancer.










Left- Us at Livestrong
















Left- Dan preparing for white water rafting. Believe me- don't listen to the guide when he suggests you take a dip in the Arkansas River. Coldest thing I've ever felt!














Left- At Jen & Roy's wedding in Colorado. The background scenery in this picture provided a magnificent backdrop for their ceremony. We don't look so bad ourselves.










Dan & Katie at breakfast this morning. I think I have a little competition from my niece. She really likes her Uncle Dan (or Danny as she calls him, even though no one else in my family does). This morning she grabbed his hand and said with a big smile- "I love you Danny!!!". My heart melted on the spot!