Tuesday, November 25, 2008

Giving Thanks!

We are happy to report the first GREAT news in 5 months... the scans today showed a 25-30% decrease in all areas!!!!!!!!!!!!!!!!!!!!!! Can't really ask for much better news. Dan had treatment today, but only about 80% of the full dose. The doctor wanted to put it off a week to allow Dan to enjoy Thanksgiving, but Dan really wanted treatment now to enjoy Christmas (his favorite time of the year).

It's still a long road, but it's definitely moving in the right direction!

Monday, November 24, 2008

Short Sighted

A CT scan is scheduled for tomorrow to give us an update on the first two rounds of Taxotere / Avastin. I’m feeling pretty confident the new combo has been working. My cough, even though it still lingers, has decreased which is the tell tale sign for me. While the chemotherapy has been difficult to handle, I just know my body and the cancer is getting better.

Some family and friends have asked how many cycles will I be on or what will you do next if it’s not working. Call me short-sighted, but I think I’ll deal with that when the time comes. The mental battle is a difficult game to play, but if I give in to planning for the worst - when will I have time to focus on getting better and succeeding? It is that positive expectation that has gotten me this far and hopefully will for awhile longer.

Thursday, November 20, 2008

Uneventful Week

That’s a good thing in the cancer world. No tests. No scans. No chemo. Just a normal week of trying to catch up on sleep and work! Sorry I don’t have any exciting news to report.

However, I would like to mention the story about golfer, JP Hayes. For those of you that didn’t catch the news story this week, JP Hayes was playing in the end of the year PGA Tour qualifying tournament. During the middle of his round, he pulled out a new ball from his bag. After finishing the hole with the new ball, he realized the ball he was playing was not the same model with which he started the round -- by rule, a two-stroke penalty.

"I realized there was a penalty and I called an official over," Hayes said, according to the newspaper. "He said the penalty was two shots and that I had to finish the hole with that ball and then change back to the original ball." However, two days later in his hotel room, Hayes realized that the errant golf ball might not have been on the approved list.

"It was a Titleist prototype, and somehow it had gotten into my bag," he said, according to the Journal Sentinel. "It had been four weeks since Titleist gave me some prototype balls and I tested them. I have no idea how or why it was still in there."

Hayes had a choice: He could have said nothing and kept playing, with no one aware of his mistake. Or he could turn himself in and let his mistake cost him a spot on the 2009 PGA Tour. He chose the latter.

One word...integrity.

I'd like to say that I would have done the same thing, but you never know until you are in that situation. I think it was John Wooden who said, "The true test of a man's character is what he does when no one is watching." JP Hayes is obviously a man of high character who values being able to look at himself in the mirror more than getting ahead. If who want to know who the heroes are in this world look no further. While some say their heroes are people battling this diesease or overcoming some of life's challenges, I'd like to say that for today JP Hayes is my hero. I’ll be rooting for him in the few events he’ll be allowed to play in due to sponsors’ exemptions. Golf - there is no other sport like it.

Finally, happy birthday Joe and Mrs. Rodgers!

Wednesday, November 19, 2008

Lady of Leisure

As some of you know, I was let go from my job at the end of October. Of course, it's never a pleasant experience to hear that you're services are no longer needed, especially when you've worked hard and made personal sacrifices for a company. But that's life! Even Oprah has been let go from a job! Plenty of people are finding themselves in a similar situation these days, although hopefully they don't have the added challenge of dealing with an illness as well.

I've had several people tell me that it's cruel that I lost my job or that I am so strong because I am able to deal with this on top of cancer. Well, those of us dealing with cancer don't want to be treated any differently, so you can't really complain when you aren't, even if it means losing a job! And I don't consider myself to be any stronger than the next person- you would do the same things if someone you loved needed you. Personally, I'd rather be resilient than strong. Strong seems overrated and too restrained. Resilient seems more hopeful.

I'm not bitter or mad about losing my job. I did a lot of great things and created every possible opportunity for myself. I don't even feel the need to look back know that I am gone. All of this tells me it was time to move on, and I am not sorry about how it's working out. Now I can focus on the homefront, and I feel lucky to have this time off, even if it wasn't planned. I don't think I would have felt this way if I didn't have such a good teacher in Dan when it comes to being resilient. As he said, it's not about how many times you're knocked down, but about getting back up. In the grand scheme of things, this is more like a slight stumble or just a change of course.

Ok, I admit I am bitter about one thing. I am upset that Dan and I won't work across the street from each other any more. No more lunches or valentines hanging on the building across the street :(

Friday, November 14, 2008

Don't Mess with Texas

At the moment, I am sitting in the Austin airport crossing my fingers that I make the connection through Nashville- football playoffs are tomorrow and I can't miss them!

Wow- what an interesting & enlightening few days here in Austin. The YAA conference was my first foray into the "business" side of non-profits (as opposed to the survivorship side). Not too much difference than the for-profit world, other that the people joined here are waaaaaay more passionate about their jobs!

On the one hand, it's amazing to see all of the creative resources directed at the young adult cancer population. On the other, there is still a long way to go to making sure that this population gets the full services it needs. Being caught between children & adults in the cancer world is an interesting place to be, and there are some huge gaps that need to be addressed. It's very motivating to be a part of the team, though I am still trying to figure out all of the acronyms, federal agencies, etc!!! There is a lot to learn, and I need to figure out what I'd be most interested in doing. One thing is for sure... there needs to be some attention focused at the partners and families of young adults, because it can be a pretty lonely place. And there are plenty of opportunities for us to expand NCCF, while working with the other organizations.

The best part was getting to network with all of the great, talented & inspiring people from LAF and the other organizations. I saw some folks that we had met in Columbus at the Livestrong Summit and met others who knew Dan and were big supporters. While I felt a little on the outside in terms of my technical knowledge, I did feel like a part of the community and it was nice to share experiences with people.

I know some people might be wary of going to a cancer conference, but these are some of the most genuine and fun people I've met in a long while. I mean, anytime I find myself karoke-ing next to an oncologist while riding on a river boat in downtown Austin is sure to be a good time (song of choice: Friends in Low Places- always good for crowd participation).

But it didn't feel quite right without my partner in crime, and I can't wait to get home to him.

PS- In case you didn't see it, Dan's picture was featured as part of the Faces of Lung Cancer on a piece on the Today show. Cut and place the link below- Dan's picture is right next to Matt Lauer's head.


Thursday, November 13, 2008

More on the speech...

I don't know if I was born to be on stage. I can't bring "sexy back" like Timberlake can or throw a football like Peyton Manning can throw a football, but if being on stage means turning a story or experience into a message that hopefully motivates others, then I'd say that's me. I get excited. I get nervous. I know public speaking is not everyone, but for me it seems to come natural. I can't emphasize enough the importance of being prepared, that is the key to success.

It's funny, on Monday the adrenaline did take over. I knew I had no voice, my nose was running, and my throat was throbbing. The best experience for me was giving the CEO a call to action in my speech to take a stand against lung cancer, but l had no idea he was sitting in the room among the 150 top researchers and scientists in the company. The CEO of an $18 Billion Dollar company - crazy. Afterwards, we spoke for a few minutes, I don't even remember what about, but the exchange was genuine and he's probably not bad guy to have on the "Waeger Will Win" team. I wonder if he plays golf? Anyways, I'll be sure to include a green wristband in the tha
nk you...

Below is a quick email reaction from one of the researchers in the room -

"Thanks for bringing dan in to talk. He was awesome! Please let him know that his visit really helps us in the labs to put a face and a personality to the disease we seek to treat. He is inspirational and his story will continue to motivate researchers like me to develop the next therapies for him and other cancer survivors. We will be successful in extending out the right tail of the survival curve. We will right shift the whole curve. We have to. It is not just our job, it is a vocation."


Meg is currently at the Livestrong Young Adult Alliance meeting in Austin. She flew out Wed afternoon and returns Friday night. We decided it was just too much for me this week. My sore throat has been throbbing the past few days and I just needed to rest. If you recall, the first cycle we thought it was related to the cough or taking an inhaler, but round 2 confirms that it's a side effect of the chemo. I'll talk to my doctor before next cycle, but just surprised. These are two new drugs for me, so I guess there is always something new. I'm getting tired of smoothies, soup, and protein shakes, so I'm hoping to force down some solids tomorrow.

The Young Adult Alliance started two-three years ago.
Bringing together for the first time key voices in the cancer community to effect positive results for young adults, the LIVESTRONG Young Adult Alliance is a coalition of organizations with the goal to improve the survival rates and quality of life for young adults with cancer between the ages of 15 and 40. The Alliance is committed to promoting research and the investigation of the problem, serving as a voice for the issue and promoting effective solutions.

To read more: http://www.collegiatecancer.org/content/view/76/37/

My foundation was lucky enough to be an inaugural member. I've attended the first two years and thought a few months ago that it would be great if Meg could join me this year. Who knew she would have to carry the load for the whole team this time around? I couldn't ask for better person there to represent and I can't wait for her to write about it! Enjoy Texas babe...

Tuesday, November 11, 2008

Comeback Kid

I honestly didn't think we'd make it through Dan's speech. We managed to arrive in Indy with little problem. But as soon as we hit the door, more side effects kicked in and by the time we awoke yesterday morning, Dan's voice was gone again. Plus he had a severe sore throat on top of the cough which made it all the worse for him to get through a 10 minute speech. Even as we headed down to catch the cab, we weren't sure if he could get up and speak.

But he did, and he was wonderful. I hope you all have the privelage to watch someone you love do something he or she was born to do. Dan was born to be on the stage. I've helped him with speeches and edited for him, but to watch him deliver his message was amazing. He certainly held his own in a room full of top scientists and researchers who had more letters behind their names than most (MD, PHD, MBA). Dan joked that it was a Brett Favre (or maybe even Michael Jordan) comeback- rising from illness to go out and deliver one for the team. It was something special to see. Best of all, Dan made a call to action of the CEO not even knowing that he was in the audience. When we got to meet him afterward, it was a great exchange!

“To those of us in oncology- doctors, nurses, researchers- it may seem that some days, the challenge is too big, too tough.

We hear about another friend, parent, or co-worker being diagnosed. We hear about those that make it, but a lot of times…we unfortunately hear about those who don’t.

In difficult times, we must remember that life’s challenges are not supposed to paralyze us and bring us down, but help us discover who we are and the changes we can become.”

Friday, November 7, 2008

Big Girls Don't Cry (but they should)

All things considered, it has been a quiet week. You know- treatment, shots, side effects- just the normal stuff these days. We are working towards Dan's recovery slowly. Positive attitudes are in check, and we're doing just fine!

Sunday we'll be leaving for a speech Dan will be giving to a team of scientists at a pharmaceutical company in Indianpolis. I've been fortunate to edit Dan's speeches, and have watched them on tape, but haven't been able to see him in person. Until now! Although the real reason I am going is to be Dan's back-up on the outside chance he loses his voice again or isn't feeling up to delivering the speech himself.

I have to admit, I am nervous about having to step in for him. This is weird- I've never been nervous in front of an audience. I've given many speeches and even taught multiple day seminars before, always enjoying being on the stage. Before, my only concern was losing my place or not being able to answer a question. Now, I am worried I may end up a puddle on the floor!

I've written before about my tears, which come almost daily. In the beginning, it was more about being scared or angry or helpless. Now, they are more about being moved- by kindness, by little joys, by HOPE and well, a lot by love. So, getting a little teary these days isn't really so bad at all. It's almost a goal. One that I remembered from the the first person I ever "knew" with cancer was Jim Valvano, the NC State basketball coach whose image is flashed every March during the NCAA basketball tournament. You know the one- he is running around the court after an improbable last second victory, just looking for someone to hug.

Ten years after that victory, Jimmy V delivered a speech at the ESPYs as he was at the end of his cancer battle. You know the one- the one that ends "Don't give up. Don't ever give up."

When you get chance Google that speech and watch it on Youtube. You'll find that Coach V left us with an even better lesson earlier on in his talk.

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.”

The first two- laughing & thinking- are pretty straightforward for me. Having my emotions moved to tears every day in a POSITIVE way has been one of the biggest lessons for me. You should try it- just let it go. You'll be surprised how good you'll feel afterwards. And having things in your life that are so special that they make you emotional, and being able to experience those emotions as they come to you... it's not such a bad thing.

So, if I get the honor of reading Dan's words for him, and those tears come, it won't be something to be embarassed of for me. Just another successful day of thinking, laughing & crying.

Wednesday, November 5, 2008

Don't Mess with Meg

A few weeks ago, I remember having a pretty rough day. I was lying on the couch and not feeling my best. Meg and I were talking and she looked into my eyes and said, “I would amputate my left leg if it meant you wouldn’t have to go through this.”

Talk about true love! For those of you that don’t know Meg, she is loving, compassionate, and caring. She welcomes all, friend or foe, with a warm heart and a big smile. She is also loyal to a fault. The scary thing is I knew she was truthful about her previous comment and realized at that moment she would do anything for me.

This past Saturday after flag football, we headed to our favorite local watering hole and the place where we met! For most of the day, I had been feeling well. We enjoyed the nice weather and a few beverages (diet cokes for me). Finally, it was time to walk a few blocks back to the apartment.

For those that don’t see me day in and day out, the cough has still lingered and can create fits in the morning and on exertion. Walking home this past Saturday was no exception. I was coughing forcefully, pausing every 20 yards to just catch my breath. Holding my hand, Meg was doing everything she could to comfort me. The bar was only 4 blocks from our apartment. With just a short distance to go and passing the last restaurant, I finally had to stop and bend over. While coughing vigorously, I overheard 4-5 gentlemen on the restaurant deck coughing on purpose in a mocking fashion. I immediately thought to myself, what a crime? I knew I couldn’t do anything about nor could I muster up the energy to confront them. Do you they have any idea what I’m going through? Do they know what’s it like to be a cancer survivor, go through chemotherapy, radiation, surgeries, and all the side effects that accompany a diagnosis both physically and mentally? At the same time, I thought do they know who they are messing with?

Before I could even look up, Meg marched right up the stairs to the restaurant deck. Outraged at what she had witnessed, she went up there with fists clinched and guns blazing demanding an apology. In just a few seconds, she managed to give them a glimpse into our life, the life of a 26 year old facing stage IV lung cancer, a non-smoker, facing a horrendous disease and she demanded an acknowledgment that there actions were inappropriate. While the confrontation did not escalate to a physical one, the large group of men I think were shocked. Luckily, our other friend pulled Meg away, but they definitely learned their lesson – don’t mess with bull or you’ll get the horns.

Thousands of cancer survivors have side effects or symptoms that mount to physical manifestations in some form or another for the world to see. We have bald heads, numerous scars, chemo ports dispensing our medicine, or a vigorous cough. The stares, mocks, or simple attention by clueless outsiders is just another reminder how much education is needed around a disease that suffers from such a bad stigma. This post is not for others to feel sorry for myself or Meg. It is not the first time and certainly will not be the last we will have negative attention. I’m just grateful that I have a bull in Meg that will march into a crowd of men twice her size or do anything in my defense. Again, this is not about me or Meg, but our goal to educate the masses, even if it is just one person or one group at a time.

Monday, November 3, 2008

Happy Halloween

Sorry about the late post. On Friday, Meg and I went to see her nieces go trick-or treating for Halloween. Pictured below are two cute wicked witches of the East, Meg and her niece Lucy. For me, Halloween wouldn’t be complete without a few carved pumpkins. Both of us haven’t carved pumpkins in years and it was fun to bring back a tradition so many share. Pictured below are our two pumpkins!

Reflecting on the past three weeks, the past cycle has been a roller-coaster ride to say the least. I’ve been on chemotherapy for 3 years, but the combination of taxotere and avastin is definitely more intense than Alimta. Two weeks ago, I remember writing about “waiting to turn the corner” as I struggled to get back to feeling my normal energetic self. While it took longer to recover than one would wish, I believe the roller-coaster was more of an uphill climb. I saw a few friends on Saturday and they said I looked better than I did just a week ago at the golf tournament. That’s always good to hear!

As weird as it may sound, I’m looking forward to chemo tomorrow. It’s a difficult road ahead and I know I will have my bad days, but I think the chemo is the only thing providing relief to the cough. While the cough is still present and more potent in the mornings, I do see a change from three weeks ago. Let’s pray the cough continues to get better and for a more tolerable three weeks!