Fancy Pants Thursday

Thanks to my better half, I'm sporting some cool blue pants today that were on sale from JCrew along with a hot looking belt! In the picture is my co-worker, Lisa, and I. We both work for the National Coaltion for Cancer Survivorship. http://www.canceradvocacy.org/

To mention a little bit about work, NCCS is the oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors. We believe in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances, and delivers quality cancer care. We have a legislative advocacy network that engages constituents across the country in federal cancer-related issues.

For the most part in this blog, we will attempt to leave religion and politics out of it. Cancer is a bi-partisan issue and affects everyone.

However, a fellow co-worker and long time cancer survivor said this, "This Friday, August 1 is 8/1/08. I know that doesn’t mean anything to you necessarily (given that I'm Catholic), but it does to me. In Jewish mysticism (Kabbalah), numbers have great significance. The word for "life" in Hebrew is "chai." The two Hebrew letters that make up the word "chai" are chet and yud. When looking at the numerical value of Hebrew letters, chai is equivalent to 8 and yud is equivalent to 10. So "chai", chet and yud together, equals 18."

I guess I'm telling you this b/c I do appreciate the comments and well wishes. Since I’m not symptomatic and I don’t have or feel a physical manifestation of the cancer, it is really just a mental battle right now. That to me lies the fight.

Dan on Podcast

Hi everyone-

I just wanted to post a link to a LIVESTRONG podcast Dan was a part of for the Lance Armstrong Foundation (LAF). Dan speaks at the beginning and end of the last podcast on the page under "Work".

http://www.livestrong.org/site/c.khLXK1PxHmF/b.4277405/k.6983/LIVESTRONG_Podcast_Series.htm

I am also posting a link to the LAF blog which has a lot of great reads on what is going on in the cancer community. There is a great article posted on Ted Kennedy's recent surgery and his ability to leverage so many great doctors. While we don't have the status of Senator Kennedy, his tenacity & own self-advocacy remind me of Dan. Interestingly enough, Senator Kennedy's daughter is a 5 year lung cancer survivor.

Here is the blog- second article http://livestrongblog.org/

Treatment Update

Just a quick note to let you know that Dan is scheduled to have a biopsy on Friday morning. This test will help us gather genetic information that may be helpful in determining which treatment course to take. Dan will have preliminary bloodwork before a sonogram. The sonogram is used to see whether the spot on his liver is large enough & in the right place to allow for a needle biopsy. If they can pinpoint the spot, they will numb the area and use a needle to remove a part of the tumor. From what Dan tells me, it should be pretty simple with no real downside & we can be out on the town that night. It will then take about seven days for the genetic testing.

It sounds odd, but we need your prayers & positive thoughts that the radiologists will be able to see the spot & that it is in a place where the tumor can be accessed for biopsy. In other words, just because a biopsy is in order doesn't mean that we may be able to get one.

We are very interested in having the biopsy to get more genetic information to 1) hopefully provide some greater clarity on the current treatment course & 2) to have the information in our back pocket should we need it later on down the line. As Dan wrote in his earlier post, new tests are available every day. What wasn't available 2 years ago for lung cancer patients can now help guide treatment and (hopefully) prevent survivors from having to endure multiple types of treatments before hitting on one that works. So while we have recommendations on treatment, the biopsy would just give us the extra insight.

One of our goals with the blog (in addition to letting you into our fascinating life) is to educate family, friends & others about cancer. So we welcome any questions you have, and if you post them in the comments, we'll discuss. We ourselves have a hard time understanding what is going on & what they doctors' are talking about, so we imagine others must as well.

If you'd like to come sit with us on Friday morning, we would love to see you. Email Dan or I and we can give you the information.

PS- We will continue to write about the Summit, so there should be some good posts this week!

LIVESTRONG Weekend

The Livestrong Summit is finally over and we just got back from Columbus, OH and the 6.5 hr drive! Saturday was jammed packed with emotional and inspiring keynote speakers, team building exercises and breakout sessions. On Sunday, they gave out team awards and then hosted a panel consisting of Lance Armstrong, The Ohio State University President, Dr. Sanjay Gupta (CNN), and Dr. Bernadine Healy (U.S. News and World Report). In terms of team awards, I’m proud to say that Meghan’s team dominated the fundraising tract and won both contests over the weekend. For their winning performance, each member was awarded a small video camera. It’s a small handheld device no bigger than a cell phone or a blackberry, but she got one! (So now we can post video messages with our blog once we figure it out!)

Overall, the whole weekend was really a wonderful opportunity to be part of such a special movement. In my mind, the face of cancer is changing right before our eyes. As Meghan said to me in the car ride home, “I was surprised to see how normal and healthy the people were... I couldn’t separate the cancer survivors from the family & friends.” This was surprising to me. If someone like Meghan (who lives with cancer everyday) is surprised by the face of cancer today, I wonder what people who are new to the disease think when they hear the phrase “cancer survivor?”

The fact of the matter is that people with cancer do get sick, they can lose their hair, they can have surgical scars or radiation marks…….but they can also look like the mother of two next door, the dad coaching his son’s baseball team, a co-worker in the office next to you, or a 7 time Tour de France winner. The word “Cancer” or the “Big C” has changed so much in the past 5, 10, or 20 years. New technology, new research and increased funding & awareness have changed cancer from a taboo topic and silent killer. What was once not talked about openly in my parents’ generation has become a curable or chronic disease and one whose battle which will be a national priority and a welcomed household discussion. The people, the passion, and the energy of the hundreds of attendees will, as Meghan said, “translate into a powerful grassroots effort that will move the cancer mountain.”

I just want to thank the wonderful LAF staff from Brenda flagging down a bus for us the first night to Melissa, Haley, Tina, Matt, Doug, Nikki, Sue and just everyone for reaching out to Meghan and me. You guys put on an incredibly empowering weekend and your efforts shouldn’t go unnoticed as there are still many of us still battling the disease.

We'll post some pictures and more about the Summit later this week.

LIVESTRONG.

Mind the Gap

We've just finished the first full day of the Summit here in beautiful Columbus, OH at Ohio State.



The first night was a little bumpy. The shuttle never arrived at our hotel and by the time we arrived at Presidential Townhall, we were shut out by Secret Service. All was not lost- we made our way to local bar for a few $1 drinks with some new friends from the Summit. From what we heard today, the Townhall was "electric", with both Lance Armstrong (just "Lance" to most people here) and John McCain addressing the need to strengthen the resources for all people at any stage of their cancer experience. We were also very pleased to hear that both Lance and Senator McCain directly addressed to need for more lung cancer funding and research!!!!



Today was a full day of keynote speeches and breakout sessions. Both Dan & I are in the Fundraising section, and look forward to applying some great ideas to NCCF. The highlight of the day was making 60 second commercials elevating cancer fundraising to our national agenda. I am happy to report that my team won the contest over 12 other teams and our commercial will air during Sunday's final address! Hopefully we'll get a copy that we can share with everyone.



Of course the best part of the experience is meeting other cancer warriors, both those who've overcome personal diagnosis and those who are just passionate about bringing an end to cancer. One person we were happy to speak with was Doug Ulman, president of the Lance Armstrong Foundation. Doug is also a fellow survivor. Like Dan, Doug was diagnosed as a young adult and started his own foundation, the Ulman Fund, which supports other young survivors. Check out http://www.ulmanfund.org/ for more info.



And of course, we appreciate the opportunity that the Lance Armstrong Foundation is giving us to be part of such a special movement. I have no doubt that the energy, enthusiasm & sheer willpower of the Summit delegates will translate into a powerful grassroots effort that will move the cancer mountain. You can read much more about the Summit at http://livestrongblog.org/



I will end this post with a quote that I know will stay with me. "We need to close the gap between what we know and what we do". More thoughts on that next week.



We hope you're all having a wonderful and joyous weekend.



LIVESTRONG.

LIVESTRONG Road Trip

Tomorrow morning we will be getting up bright & early to leave for Columbus, OH. We're attending the 2nd annual LIVESTRONG summit. The summit will bring together 1,000 current and potential leaders who care about cancer issues & are willing the champion the cause in their communities. Just a bunch of regular, everyday folk who want to do something about cancer.

We applied months ago (me about 3 months before Dan!), and I've been looking forward to this for awhile. Nothing like messages of empowerment & survivorship to get the energy flowing. Plus, I like road trips, and Ohio is like home for me since I spent four glorious years at Miami U in tiny Oxford, OH.

We're bringing the computer, so we'll post updates on-the-go. How hi-tech!

Great Expectations

Pete Rose, the famous baseball player, was being interviewed in spring training the year he was about to break Ty Cobb's all time hits record. One reporter blurted out, "Pete, you only need 78 hits to break the record. How many at-bats do you think you'll need to get the 78 hits?" Without hesitation, Pete just stared at the reporter and very matter-of-factly said, "78." The reporter yelled back, "Ah, come on Pete, you don't expect to get 78 hits in 78 at bats do you?" Mr. Rose calmly shared his philosophy with the throngs of reporters who were anxiously awaiting his reply to this seemingly boastful claim. "Every time I step up to the plate, I expect to get a hit! If I don't expect to get a hit, I have no right to step in the batter's box in the first place!" "If I go up hoping to get a hit," he continued, "then I probably don't have a prayer to get a hit. It is a positive expectation that has gotten me all of the hits in the first place."

Tonight is softball night. It’s the last game of the season. There is an outside chance at making it to the playoffs. My team needs a win and another team needs to lose. Given that I was a decent baseball player in high school and this is slow-pitch softball, I truly expect to get a hit every time.

But shouldn’t that be the way we approach life?

This “expectation” or philosophy can be applied to many different facets in your life. Your attitude truly makes all the difference. For me with cancer, if I don’t wake up every single day thinking that I’m going to beat this terrible disease then I don’t deserve to wake up in the first place. For the rest of you, everyday presents some type of battle. You just need to believe you are going to knock it out of the park.

Taking it to the Streets

Thanks to Devon from the Lance Armstrong Foundation for remembering Dan this weekend during the Iron Girl in Irving, TX!!!!

Long Week=Much Needed Weekend

We're at the end of another week. I think the emotional toll is starting to translate into physical exhaustion. All of this heavy thinking is tiring us out! Plus, we haven't stopped moving these past fews weeks and have probably taken on more trying to fit things in before treatments start. The world doesn't stop moving just because you get bad news- there is still work to do, friends to visit & golf to play. But I think we need a little more balance!

I'm really looking forward to this weekend and re-charging the batteries. First off- I need sleep! I've been waking up super early these days thinking about work (some things never change). We're going to take some time to build up our reserves, which means eat a little better & get some exercise & veg a little on the couch. And we'll also do some our favorite things. Sunday Dan is golfing with his friends, and I am going to spend some time with my family. I have two adorable nieces who always brighten my world and visiting with them will always make me laugh.

So hopefully just a lot of "normal" this weekend, which we deserve!!!! We had dinner with friends last night, and it was just what we needed. No cancer talk, and a few hours to enjoy the break. A great way to kick-off the weekend.

Thank you for all the positive feedback on our blog. We've had about 100 visits per day so far, so even when you don't comment, we know you're coming back.

It's only by believing, hoping, loving & living that we're finding joy during this anxious time.

Here's wishing you a joyous weekend!

Cancer’s Evolutionary Leap in Just 2 Years

While we're anxious to take the next step, we want to take the time to make sure the next form of treatment is the right one. Last night we discussed the next viable options with my doctor and 3-4 therapies available for lung cancer and their effectiveness. One option (a combination of 2 chemotherapy drugs which I haven’t been on before) seemed to outweigh the others. I would be confident with this decision and we could start tomorrow.

However, cancer treatments and cancer research has taken an evolutionary leap in just 2 years. Literally, drug development and targeted therapies have exploded in the past few years. Driving this influx is a new understanding of the cancer cells DNA, molecular structure, and mutations that turn healthy cells into malignant ones. There are even certain diagnostic tools or DNA markers that researchers look for that better identify a cancer cells DNA that didn’t exist 2 years ago.

With that being said, we feel that having the genetic testing on my cancer cells is important to our decision for multiple reasons. The biopsies taken 2 and 3 years ago could be tested, and my doctor is looking into it. If those initial samples are viable for testing, then great. If not, we will probably have to go in next week for some form of biopsy that hopefully won’t be too invasive.

Cancer research stands on the threshold of unprecedented opportunity and I can’t imagine what will exist 2 years from now and another 2 years after that. The new therapies or “smart drugs” are changing the face of medicine, not to mention giving so many of us a sense of HOPE. They have already impacted longer survival rates and have contributed to the concept of cancer as being a chronic disease.

I wish I could say that we were starting some form of treatment this week, but it looks like things will just have to wait another week or two.

The Mental Game

As we move closer to meeting with the doctors, it's time to start listing all of the hard questions and trying to figure out how we'll actually answer them. The one thing for sure is that there probably won't be a consensus. Who gets the biggest vote? If it's not clear-cut, what will push us one way or the other? I imagine it will be part science, part leap of faith.

We've been in somewhat of a bubble the past couple of weeks. It's been awhile since Dan's last treatment, so the "normal" three week cycle has given way to what some days seems like a life without cancer, at least in the physical sense. Dan feels great, so it's really hard to imagine that the cancer is in there somewhere... that sneaky little sucker.

Mentally, cancer has never loomed larger for me, and has never been so all-consuming. Despite a firm belief in Dan, it is hard not to have a heavy heart. I want to solve this problem so badly, yet am powerless to do so. I know many people reading this feel the same. Yet it's the willingness of so many people who have reached out to us with nothing more than words of hope, many of whom we've never met, that is creating a soft spot to land as we bounce from emotion to emotion. I am in total awe of the generosity and empathy people have shown us.

Have a Good Weekend!

We're off to the beach (Meg) & Philly (Dan).

Thanks for all of your notes & comments. Keep 'em coming! They mean a lot!

Waiting for the Experts to Weigh In

There is still no news this week. It looks like it will take a few more days to have all the doctors weigh in. I’m fortunate enough to have access to some of the top doctors in the country involved between my doctor and the connections through my work. My case has always been a bit of a medical mystery so there will be no real consensus or general direction. In short, it’s probably going to be making a tough decision between a different form of standard therapy or going into a clinical trial. Enjoy the weekend and be sure to leave your comments! We read them all!

Softball is the Best Medicine

I went 2-2 on Tuesday night with a double and single down the left field line. My performance was inconsequential because playing softball each week really is the best medicine right now and offers me an invaluable break. For those of us in this fight, we think about cancer every day. Some days get more attention than others and unfortunately, the past two weeks have garnered a lot of attention and energy. Playing softball, however, grants me an hour or two during the work week where I don’t have to think about cancer or anything cancer related.

My team is awesome and I’ve already established great friendships. The wonderful thing about playing softball is that I stumbled onto the team through one of Meghan’s friends. They know nothing about me or the situation. Hanging out with them provides me with a gift and freedom that can’t be described. To them, I’m just softball Dan who runs slow around the bases and nothing else.

I must admit, I am a little slower these days (and I can’t wait for my buddies to comment saying I’ve always been slow). I’m sure half of it is due to my old age of 26, but I’m sure half of it is due to the cancer. I don’t necessarily mean the cancer itself, but I’ll admit that I’ve lost a bit of lung capacity from all the treatments and radiation over the past 3 years. Anyways, I’m wondering what my teammates will think if they knew. I’m sure they will apologize for calling me slow, but they have no idea the gift they have given me over the past 5-6 weeks.

In a comment, my sister wrote, “Although you have cancer, cancer doesn't have you -- you still live life to the fullest and shouldn't stop doing so.” I couldn’t agree more…

P.S. Check out NBC at 8pm tonight and watch “The Greatest American Dog.” I would also like to give a shout out to my sister’s dog Chaucer who is not just an 80 lb boxer but also a 2 yr cancer survivor. After we find a the answer to lung cancer, I think dogs should be next on the list.

-Cesar Waeger

What Do I Say to You?

(Note: scroll down to see the other postings)

I hear this quite a bit recently as people learn of what is happening to Dan. You're not alone in your thinking. I am usually wondering the same thing. How do I tell people? How can I comfort them and give them hope but at the same time, allow myself the right to be scared or express any of the emotions that are running all over the place these days? I really have no idea. Other than that you say something. There is no right or wrong answer. Acknowledging a friend's or loved one's pain or fear can take a lot of courage, just as it takes courage for that person to open up in the first place. But start the dialogue.


A little over two years ago, a good friend was diagnosed with cancer in her late twenties. At that time, I hadn't known anyone close to me, let alone someone my age, with cancer. I was thinking back to when she told me, my reaction and what made it easy for me to talk to her. At the time, she and her husband were living in DC far from their families on the West Coast. Having spent many years away from home, I recalled how tough it was for me to be so far away even when small problems popped up. So I just figured that in some small way, I could relate to her. Even if I had no clue about cancer, I knew something about being isolated from family, and therefore, I found a pretty easy connection. While we did talk about her treatment, I am pretty certain we did a fairly decent job of talking about work, mindless gossip and other normal topics as well. And we always had yoga and Starbucks- those things were there before diagnosis and continued through & beyond her treatment! (Side note: I am happy to report my friend is living well as a cancer survivor, NED (no evidence of disease) and just bought a house!)


Listen, I'm not going to lie and say that Dan's cancer is in anyway easy to talk or write about. Some days I don't want to think about it, and some days I want to talk about it all the time. But I am now appreciating the opportunity to "reconnect" with friends across the world & work on those friendships. I am thankful to have this week of buffer time before the doctor gives us our options to enjoy spending time with Dan & the life we're building for ourselves. Honestly, it's impossible not to have a positive attitude when you're around him! Finally, I am so amazed & grateful that so many people are here to support us and carry us through this time. The calls & emails are so appreciated! So I guess that the only wrong thing to say is saying nothing at all.


Stay Positive. Stay Focused.- Meg

Attitude is Everything

This phrase is what first comes to my mind as we begin and prepare for what lies ahead. Over the past week, many of you have expressed your heart-felt concern and desire to be updated regularly so I think this blog will be a great communication vehicle. It will not only allow us to keep you updated, but also allow you to express your own attitudes, concerns, and thoughts.

First and foremost, I can’t thank all of you enough for the emails, calls, or texts over the past few days. It means a lot and honestly helps a lot, too. Your words of encouragement were also a good reminder and kick in the butt to remain positive and focused. I chose “attitude is everything” as my first topic for the blog, because I truly believe it, but it took your collective comments to remind me. Last week’s news was discouraging, but with Meghan, my family, friends, and co-workers reminding me that it will be just a bump in the road then that’s what it will be. It is statistically proven that a positive attitude and strong support system will increase one’s chances of survival and improve their overall health. I know I need a team of supporters and there is no doubt that we will beat this together.

While I appreciate all the comments over the past week, if I had to pick a winner it was one in a text message that said, “I haven’t worn this bracelet for three years to see anything but a win.” In my opinion, that sums everything up and I can’t really say much more other than thank you and I'll deliver the win! So be sure to write your comments and enjoy the blog!

Playing the Waiting Game

So I guess I get the first official post. Welcome! Dan and I hope that you'll visit often and share our blog with others who may be going through something similar. And hopefully you'll leave lots of comments :)

When we received the news last week that there has been a "modest but real" spread in Dan's cancer, it was a pretty harsh blow. I think we were both shocked. After all, we had just signed the contract for our wedding reception and Dan had fully rebounded from the virus that landed him in the hospital at the end of April. There was no reason to think that things hadn't fully returned to normal.

I've learned a few things over the past couple of days. First off, I must now admit that I am a weeper. I cry a lot, usually in short spurts & sometimes in public (to my own embarassment). But not only because I am scared and worried for Dan... I also seem to cry at any sort of expression of support from people, which is a plus. I remember very early on in our relationship, Dan said it was ok to cry when dealing with cancer, but that we should just try to let it take up only 10% of the time and focus the other 90% of the time on being productive. I think it's solid advice.

Second, I learned that we're a pretty resilient pair. I think some of my favorite moments of our relationship occurred this weekend, and we really didn't do much but the normal weekend stuff. I think allowing yourself to eat ice cream in extremely generous amounts helps.

Lastly, I learned that nothing good comes from feeling sorry for yourself. Allow that 10% time limit and then get moving. I used to wonder what people do when they get discouraging news like we did. Here is what we did this weekend- cleaned the house, went to a golf tournament, started our blog, went to a bbq, watched movies, went to Church, drove around looking for possible neighborhoods to buy a house, and spent a bunch of time on the foundation (finished the bylaws, updated & posted the 2008 scholarship application & finally wrote up last year's winners). Lots of normal, everyday stuff.

After all, Dan doesn't feel any different than he did last week, so there wasn't much of an excuse to sit around and do nothing. We both know that there is a bumpy road ahead, but I think we're getting on just fine at the moment.

We won't hear from Dan's oncologist, Dr. D, until late in the week. So in the meantime, thanks for all of your emails, texts & calls. Just b/c we may not respond immediately doesn't mean that they aren't helping!

We look forward to hearing from you!