Thursday, December 25, 2008

Very Merry

This will be brief. We wanted to wish everyone a very Merry Christmas! We have been blessed by an embarrassing amount of riches this year, and are so thankful to all of you who have stood by us and lifted us when we were down. Cancer didn't give us a break this holiday, but it isn't breaking us (though it comes close at times).

We wish you peace in the holiday season. Whether it's a peaceful night's sleep from illness or a newborn, a break from a stressful job or job search, the ease of the heartache caused by your team missing the playoffs because they lost to the 2 worst teams in the league, an ease of financial worries... or the peace you find in taking a few days off, finding the perfect gift or just spending time with the ones you love... we hope this holiday season brings you an abundance of joy and peace of mind!

Here is how we spent our Christmas!

Dan decorating Karl

Christmas Eve with the moose mugs, Karl & cookies

Dan's best gift ever

Thursday, December 18, 2008

One Week till...

Christmas! I just can't believe it is only one week away. When did it creep up so fast? I saw on the news tonight that an estimated 41 million people haven't even started their shopping yet! I have to admit that I'm usually part of that crowd that starts 2 days before Christmas. Isn't that when you get the best deals? So far this year, I did buy a few things, but I'm still way behind.

As someone going through treatment, it's tough. I'm notoriously a late shopper, but I just can't run out to the store like I used to. I've got to plan ahead and factor in days that I don't feel 100%. Tuesday's treatment went ok. I felt yucky as soon as I got home on Tuesday and a little nauseated and tired last night and this morning. It's Christmas though, I'll find a way to muster enough energy to participate in the fun rituals from decorating our tree and baking cookies (which Meg and I did tonight) to the not so fun rituals of sitting in holiday traffic and fighting the crowded stores in search of that perfect gift.

But as I said, I just need to plan ahead and be a little more strategic. I can't expect to last 4 hrs shopping and driving around. I need to almost map out the stores I need to visit and be in and out. In the end, I know it's about the Christmas spirit and being surrounded by the friends and family.

(Although, there is nothing better than seeing that Christmas spirit light up in your 3 year old niece when it's your gift that becomes her favorite!)

Monday, December 15, 2008

Griswald's Christmas

Saturday we set off on our quest for the perfect tree. We found the perfect tree for us- slightly crooked, a little off-center, and full of life. Dan named him Karl. It was a good day.

Below is my first attempt at playing with my flip video camera and iMac. Not perfect by any means, but you get the point. The video is bouncy and I realized that once Dan started cutting down Karl, I pick the camera in my pocket & left it rolling for 45 minutes. Nothing but complete black. Oh, and you can hear some cursing when I realized that we had to pay in cash, and we almost didn't have enough to get Karl home. We had just enough, and the kind people at Good Spirits Christmas Tree Farm let the tax slide. How typical.

We'll put up pictures later this week of Karl all decked out.

Chemo tomorrow. Keep Dan in your prayers!


Friday, December 12, 2008

Want to Get Away for Awhile

The tag line from the southwest commercial sums up my attitude towards cancer this week. It’s not that I need to physically get away, although that is always nice, but trying to ignore the constant reminders which most people don’t even notice. Every week I come across countless news articles, commercials, segments on tv, and everything else that mentions cancer.

Some are good, like the article that came out last week that says cancer rates are declining (although given the hike in population this number can be misleading). Sometimes I seek out the articles looking for the latest treatments and revolutionary studies. As for others, I just get overwhelmed and say enough is enough. This week I’ve been so busy I haven’t had time to dive into these things, but it’s like the old saying – you never notice what type of car you want or that are out there until you’re in the market for a car. Well, I’m not exactly in the market for cancer, but as a survivor anytime the word pops up in a commercial, article, or tv segment it usually causes me to turn my head.

It’s tough because I don’t want to turn my head. I don’t want to be constantly reminded. I want to get away for awhile but it’s so tough to avoid. Last night, Meg and I were surfing the internet and had the show ER playing in the background. Just as you think you are escaping into the computer by reading emails and looking to buy a few online Christmas gifts, a person on the show ER needs to be treated for cancer. Ugh! Needless to say I just switched the channel. Enough is enough - let's try not to think about cancer until Tuesday which is when my next treatment takes place.

Tomorrow, Meg and I are going to a tree farm to cut down our own tree. I can’t wait! Just picture me driving out to Frederick, MD like Clark W. Griswald from Lampoon's Christmas Vacation and you'll undestand how excited I get. Hope everyone has a good weekend!

Tuesday, December 9, 2008

The New Normal

In the last post, I wrote about the need for normalcy. I was thinking mostly about being able to do the mundane things in life when we want to do them. But for the most part, I think that Dan and I are pretty much the most normal & grounded people that I know. However, if I take a step back and look at all the things we are busy with, and the things we are accomplishing despite tough circumstances... I am reminded how much we have in our life.

I don't think Dan set out to be an example, but he has found himself in that exact role- for cancer survivors, friends & family. He is a normal person, living his life. And we deal with each other the way normal couples would- we still have spats and are lazy about housework.

So when people say that we are inspiring or giving others hope... I am reminded that there are some things about our life that aren't normal. Some of them are not so fun, such as chemo, side effects and the impact on our schedule. But some are wonderful, such as when you receive a kind note from a friend.

I received this poem this morning from Dan's friend Craig. A reminder that I am marrying someone who is very far from normal :)

Danny’s Song

If there’s strength to be found
He’s gonna reach a higher ground
If there’s love all around

He’ll soak it in


If there’s hearts linked one by one

Then he knows his work ain’t done
Like relentless beams of sun
That refuse to grow dim

It’s all in him
Because Danny will win
Danny will win

If there’s silence in the doubt
He’ll push through, and shout it out
He’s the voice among the crowd
And the spirit within

It’ll never hold him down
Sound the bell, another round
In these worries he could drown
In our love he swims

It’s all in him
Because Danny will win
Danny will win


If there’s life beyond the clouds
It can wait ‘till not right now
There’s a story still unfolding,
Here on earth


There’s so much he has to give
Still his time to fight and live
With a motivation golden
In its worth


If there’s lessons to be learned
Hope and faith are never spurned
In our prayers and our concern
It’s where we begin

That’s it’s all in him
Because Danny will win
Danny will win

Because Danny will win

Thursday, December 4, 2008

Christmas Lists

Ever since I can remember, my family has created Christmas lists, and assigned each person an "angel" who would help coordinate gifts. The week after Thanksgiving, my dad would painstakingly (but lovingly) create a sheet for each person complete with a hand-drawn image at the top that reflected something personal about that person. For example, one year during my cycling days, he drew me (well, a stick figure) riding my bike up a hill with a Santa hat on. Now that we are in the digital age, my dad's creativity is found in the vivid imagery of an annual email announcing our family "angel" tradition. This year's was especially tongue in cheek, with dad (aka Ho Ho Ho Rodgers) posting a job listing for S. Claus Enterprises complete with job qualifications and compensation! Note that for those of us trying to find a job- it's a cold, cold world out there, but we can still laugh a little.

I've always loved Christmas. My parents weren't ones to spoil us with material gifts throughout the year, but they really blew it out at Christmas. The number of gifts bordered on obscene. But I loved it! I'd spend hours pouring over the toy section of the Sears catalogue (now I am aging myself), even going so far as writing down the page and item number for toys, dolls and even microscopes (I realize I am 1. a total nerd & 2. very anal). The scene still plays out today, though now I love shopping for gifts, always going way over budget.

It's hard to believe that this year is only the second Christmas that Dan & I will celebrate together. Last year we had so much fun cutting down our own Christmas tree (which required 2 different trips to the farm & Dan's realization that we don't have room for a 10 foot tree), finding creative gifts, going ice skating, heading downtown to look at the lights, and my favorite- creating a "25 days of giving" with our advent calendar. We bought a wooden "calendar" for the month of December that had compartments for each day. We filled it with notes- some were silly (aforementioned ice skating), some were about giving (donating items to Goodwill) and some were personal (writing a letter). It was fun trying to outdo each other, and it made our Christmas so special.

This year, we need a little Christmas... a lot of Christmas, actually. We've been getting knocked down a lot lately-physically & mentally. Even with the positive scan results, Dan's cough seems to be coming back the past couple of days. Living with the cough, and overall illness day in & day out is traumatic for both of us. The moments of normalcy go by so quickly sometimes. Take this morning- Dan gave a speech at a local high school who is raising money for NCCF. An hour later, he was wiped & feeling ill. It's a constant up and down battle. I hate to use words like that- battle- because it seems cliche. But it really is a battle- not only for health, sanity & sleep, but also for the normalcy we crave so much.

But cancer can't take away Christmas. In fact, it will make it even better to celebrate its true meaning. I'm having a really tough time coming up with anything to put on my list this year because the things I want don't come wrapped with a bow. Last year, Santa brought me Peace, Joy, Love & Hope... all in Dan. Those things are all still here, but we haven't been spending enough time reminding ourselves of them. So this year, I'd just like a little time to relax & enjoy it- kick back with the Griswalds & our moose mugs in our bright sweaters and get back to normal.

However, if someone also wants to give me a job, that would be cool, too ;)

Tuesday, December 2, 2008

Thanksgiving wrap-up

Yes, the news was the best we could have asked for last week. Thank you for all your comments. I wish we could have gone out to celebrate and had a few beers, but unfortunately the life of a cancer survivor during treatment isn’t that glorious. I’m happy to report that on Thursday I was able to put down some holiday food! There is so much to be thankful for, but just having a little turkey, corn pudding, and sweet potatoes on Thursday was all I wanted and I did. The simple pleasures!

Sunday night, my friends in Baltimore had a “Friendsgiving.” It was good to see everyone and hopefully that’s a tradition that will continue! Besides for Meg and my family, my friends have been so supportive throughout this journey. They had a bar fundraiser for the foundation last Tuesday, the day I had chemo so unfortunately I was unable to attend, but it looks like the raised over $1,000. That’s awesome – thanks guys!

My sore throat, mucositis, and mouth sores started kicking in Sunday night. It’s not nearly as bad as the first 2 cycles, but it’s still annoying and something I wish I didn’t have to deal with. The mouth rinse I have seems to be helping, but let’s hope it doesn’t last long. Thanks for your comments last week! I hope everyone had a good Thanksgiving!

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.

http://today.msnbc.msn.com/id/26184891/vp/27697338#27697338

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."

Awesome!

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!


Thursday, October 30, 2008

Why does your hair fall out?

Chemotherapy drugs are powerful meds that attack rapidly growing cancer cells. Unfortunately, these drugs also attack other rapidly growing cells in your body — including those healthy cells that control your hair among other things. Having your hair fall out post chemo is weird. For me, this is my second time around with hair loss. I’ve learned from previous experiences that you just have to shave it right away. If you don’t, the hair will accumulate on your pillow, on the couch, or in the sink or shower. Clumps fall onto your shirt or into your hand as you rub your fingers alongside your head. For most cancer survivors, it is an experience they will never forget. Just like remembering where you were on 9/11, or for older adults when the Challenger exploded, or for Meg when the Red Sox finally won the World Series – I remember in a split second the two times now my hair started falling out.

Even though I never really had much hair to begin with, it’s still sad when it happens. That sadness is not for vanity reasons, at least not for me. While I know it’s no big deal, as a cancer survivor your hair falling out still represents a moment in time that unhappiness wins. Unhappiness wins as a result of cancer having a physical presence in my life. On days you want to forget, it’s there to remind of the fight that lies ahead.

I’m lucky I have a decent shaped head that looks better than most other aging males. I'm lucky I found a wonderful woman that will still love me. I'm lucky that bald is the new look in Hollywood and I'm just another star waiting for my shot at the big screen.

There are few other perks of losing your hair! I won’t have to shave, worry about an embarrassing nose hair sticking out, or sweating profusely – all the guys know what I’m talking about, especially you Bill. Ok - tmi...

Wednesday, October 29, 2008

Waeger Cup Pictures

As Dan said, it was a great day and a great turnout for the Waeger CUP. With the money we raised, we will be able to give out at least 10 scholarships through NCCF. That is the next to do on the list!

Here are a few pictures from the day. The last is actually from me shaving Dan's head. Weird timing, but when we got home from the Waeger CUP, Dan's hair started falling out (not that he had much to lose). Having never seen something like that before, it was a bit weird. But then I insisted on giving him a nice side mohawk. What do you think?

Me & my Dad on the course with our sign

Niece Brielle sleeping through the festivities

Dan with Rusty & Julie, winners of the autographed Lance Armstrong Sports Illustrated cover from the raffle. A special thanks to the Lance Armstrong Foundation for supporting NCCF. They helped us raise over $3,000 from the raffle and auction with donated items!

Dan's friends presenting him with a collage & check from their recent fundraiser at the Federal Hill Lounge in Baltimore.

Dan, Erin & Justin with the collage and the nice big check!!!

Dan and the Waeger CUP winners

Dan and the Toilet Bowl champs- repeat victors

Dan with a classy new 'do

Monday, October 27, 2008

4th Annual Waeger Cup

The golf tournament was a huge success!! It was so good to see everyone – high school friends, college buddies, family friends, friends of friends, Meg’s family, my family and everyone come together. There were 108 golfers total and I know we raised lots of money!! ($$ totals will be updated later in the week…)

In the morning, Bobby, Lindsay, Holly, EJ, Meg and I were at the course early for registration. With my raspy voice, I tried to check everyone in, hand out “cancer sucks” buttons, and make sure golfers received their participant gift (green Waeger Cup t-shirts this year). While it’s not a lot of time and it always seems so rushed, I enjoy registration as it’s the ONLY time I actually get to see everyone, say hello, and thank those that show their support.

As for the rest of the day, I tried to take a little step back from managing the day to day minute details. My voice was still raspy and my energy level was probably at 75 percent. It still was above and beyond my expectations especially considering where I was a week ago. I really want to thank so many for helping. Meg led the day by thanking all the participants over the megaphone. With her heart on her sleeve, the few words that came out were perfect and just reminded us while we were all there.

My brother and his wife Lindsay get the award for traveling the furthest as they flew in from California just for the event. My brother handled the silent auction and raffle too which deserves a big thank you. For anyone that has ever run an event, know that it’s an overwhelming task, so I’m appreciative that I could float around and actually get to eat the steak dinner for the first time in four years! I want to thank the golfers that drove a long distance, the friends that came up to Meg to introduce themselves, my sister Patrice and all her friends that came to dinner, the Dorns and Lose families for all their help, etc. There are so many others I want to thank but I can’t mention everyone. However, I need to thank Mike Caporaletti, long-time friend and owner of Royal Oaks Golf Course, and his wife Angie for their work on this event. Talk about a family event, during dinner Mike is back in the kitchen cooking steaks while Angie is out there scooping beans and corn for people in the food line. Being in the service industry is sometimes tireless, but I know it wouldn’t be a success without their help.

The Waeger Cup has a lot of different meanings. For me, it was something I could do to turn a negative event in my life into something positive. It’s a date everyone puts on their calendars and counts down the days till tournament time. The past three years, I’ve always tried to educate my friends on cancer, the issues, the experiences, and life as a cancer survivor – even before the blog. I invite them to chemo sessions, email them when I’m struggling, and celebrate with them when times are good! This tournament, for me, is about helping others who can’t help themselves. It’s about raising money for people who need it. The Waeger Cup is really the Foundation’s only fundraiser and I know I’m going to be in the spotlight that day. However, last night, Tom Marshall and my other McDaniel College friends, put me in the spotlight in a way that I’m not accustomed to.

Tom Marshall and Justin Arpan held a fundraiser at Federal Hill Lounge in Baltimore the week prior. It just a short notice, they organized an event, had over 30 of our friends show up, and had the bar donate 10% of it’s earnings to my foundation. Overwhelmed by the support and cause, the bar owner upped the ante and did 20% for multiple nights. Justin and Tom presented the check and money last night at the Waeger Cup totaling $1120. Those that know me would say I enjoy being in the spotlight, but being presented with the money left me speechless. I quickly handed the microphone to my brother because I didn’t know what to say. As Meghan and I talked on the way home, it’s not about the money but inspiring my friends to care about a cause as much as I do and to care about something bigger than themselves. Thank you.

As for golf, my team came in 4th. Our secret weapon was missed, but the replacement held his own. I'm glad my friends, Stoney, Mini, Rip, and Charlie won. They were graceful in their victory, but know that I'm frustrated for not bringing home the trophy. Even when I'm not feeling 100%, I still can be competitive and frustated can't I? After all, Tiger Woods only wins 26% of the tournaments he enters. We'll get 'em next year...

Pictures and other details to follow...

Thursday, October 23, 2008

You Say It Best, When You Say Nothing At All…

I officially have no voice. Over last weekend, I developed a severe sore throat. It was so painful and difficult to swallow, my throat was just raw. While I’ve had a lot of side effects the past 10 days, this occupied the majority of my frustration. I’m happy to say that it is finally improving! Yesterday, I put down a little food and tonight Meg made a wonderful Shepherd’s pie (she loves mashed potatoes). However, eating a solid meal is a big step for me.

Looking back over the past 10 days since chemotherapy, I’ve not eaten much. The first two days I was pretty nauseous. Over the weekend, my stomach started to return to normal, but my coughing was still ever present. I knew I wasn’t getting enough calories, so Meg would either create a homemade smoothie of yogurt and fresh strawberries in the morning or bring home a 1,000 calorie one from the Smoothie King. As a cancer survivor going through a tougher chemotherapy regime, you don’t want to lose weight. I could tell I wasn’t getting enough calories, so the smoothies were perfect and the only saving grace for my sore throat. In my opinion, last Tuesday they prescribed an inhaler to help with the cough and that’s what I believe initiated the sore throat. I’m not sure that’s 100% the reason, but a reaction like that can happen.

Meg has been wonderful. In my opinion, the past week has been probably one of the toughest weeks I’ve had in a long time and she has been there supporting every step of the way. The side effects, related or unrelated, just seemed to mount and come together all at one time this cycle. The only new experience for me was a little bit of neuropathy in my fingers. Neuropathy is tough to explain, but your fingers just feel a numb, tingling sensation like they are asleep. You have difficulty gripping objects and it can be somewhat painful at times, but the good news is that in only lasts a few days.

Anyways, I’m still exhausted but I’m feeling better today! It just looks like my voice is catching the aftermath. I really can’t get out more than a squeak.

This afternoon, I went for more blood-work. We will find out tomorrow if my white counts returned to decent levels. The results from earlier this week put them at critical levels. For those that don’t understand, your white blood count controls your immune system and ability to fight off infections. In simple terms, I can’t fight off normal germs from a hand shake or everyday contact. A simple cold could throw a person with a low white blood count in the hospital, so that’s why you have to be careful, avoid crowded places, and watch out for any sign of a fever. I’ve been doing well so far (knock on wood) and hopefully the counts tomorrow will gain some ground on the positive side.

I’m looking forward to the golf tournament on Sunday and seeing everybody. Putting on an event is a lot of work from a lot of people. I’m forever grateful once it all comes together and everybody is out there having a good time. In terms of my golf game, I haven’t practiced much lately, so I’m hoping my teammates come through and pull us to victory. I’ve played with the same 3 guys every year, my two best friends from college and former teammates Serge and Joe, and our 4th was our former assistant coach. Unfortunately, coach Diehl has a prior commitment, but we will represent him well and bring home the first place trophy!!


Wednesday, October 22, 2008

Update & Guest Blogger

We are going to have a guest blogger today- Dan's friend Serge. A quick update before we get to him.

Dan's WBC (white blood cells) are low, which increases the risk of infection. So new medicine has been ordered to address that issue. The sore throat and cough are still there. Dan's voice is very raspy, so he can't talk as much as normal. And he is still wiped out. However, he is in better spirits and very focused on recovering.

We are gearing up for the Waeger Cup this weekend- rain or shine! Hopefully Dan will able to play a few holes. A lot of people have put in great effort to put the event on, and we're looking forward to raising lots of money for NCCF and young adult cancer survivors.

Ok- here is an email I received from Dan's friend Serge (I am told his real name is Alden, but all of Dan's college friends seem to go by names that have strange backstories)....

Meg wrote a while back about what to say to Dan when you didn’t have the words – concluding in the end you should always say something. After a prolonged period of denial that Dan was battling cancer, I had plenty of questions, only no one to really answer them. I wanted to know the drugs he was on, how it worked, why the radiation kills the body so much, how long it would be before he got his hair (what little he had), back. I never asked Dan any of those questions.

Why I didn’t ask them is simple – if Dan felt like talking to us about the cancer he would, otherwise my questioning would just remind him of the battle he faced. I figured the best thing I could do is treat Dan like I always did before, I would get my answers in due time, as I have. I wouldn’t baby the kid or sit around feeling sorry for him. He’d come stay with the roommates and I – we’d make fun of him, he’d mock us right back. He’d eat all the food, leave without a thanks for the hospitality and be on his way. Though he was sick, I think he was able to best be himself.

After Dan was first diagnosed, I said to a buddy, “Of all the people I know, and if absolutely had to pick someone to battle cancer it would be Dan.” I’m still not sure if it was an appropriate thing to have said, but I said it. I said it because of everyone I know Dan is the person that will not only beat cancer, but turn the battle into an opportunity. He just has the attitude that is needed. It rubs off on people. I think after his first chemo session he was already planning his foundation. Anyone who has ever met Dan, or has even read the blog, likely knows what I am talking about – where he gets that strength I don’t know. His family likely helped, friends possibly, and now Meg certainly helps – or maybe he was just born with it.

Dan switched to a new drug this past week, one that is a bit more severe and may be a bit more taxing on his body. He sees the new drugs as another opportunity to show his strength and another step on the path to being declared NED. Once that happens, Dan will spend more time growing his foundation and continuing the overall war against cancer. As for me, I’m stuck playing golf with Dan this week, but on the plus side that should provide ample opportunities to mock him.


Monday, October 20, 2008

Not There Yet

Well, the distance around the corner is proving to be a bit longer than we thought. The newest development is a severe sore throat which may be due to thrush or just repeated coughing. I've never been able to relate to any of the physical things Dan goes through before, but this is one I can relate to from a case of severe mono from high school. All we can do at the moment is try anything that helps- popsicles, jello, smoothies.

We will also be getting bloodwork done today to check Dan's counts. The treatment makes him more susceptible to infections, etc because it knocks his immune system down. Hopefully they will be ok, and the sore throat will resolve with the thrush medication.

While observing this whole experience can be somewhat surreal for me, what is very real is Dan's determination to get well. Other than saying that his throat hurts, Dan never complains and is very focused on getting better. If we could bottle whatever unwordly determination he possesses to get through this- we'd be rich and cure cancer!

So we are hoping for two things- improved response to the side effects so Dan can play in his golf tournament and good weather for the tournament. So as you go along your way this week, if you wouldn't mind sending a few prayers for those two things, we'd appreciate it!

Thursday, October 16, 2008

Turning the Corner

When does it occur? When do you turn the corner? When do you start feeling normal? That’s what I’m wondering these days. Every time I feel like I’m taking a step forward, I take the same step back. It’s tough. I know all you can do is rest & relax, drink lots of fluids, and hope for the best.

Last night, Meg made a wonderful grilled cheese and tomato soup. I think it was Meg’s first time at grilled cheese, or as she says since college. She’s showing a lot more of her domestic side these days and actually enjoying it. Grilled cheese - such an easy meal and now Meg’s favorite! Unfortunately, I couldn’t keep it down. As I said, you start to feel good in one area, but take a step back in another. So far so good on tonight’s dinner! Anyways, I’m looking forward to turning the corner. I know it won’t be long.

Tuesday, October 14, 2008

Back on Course

As we were driving home from chemo today, Dan and I were discussing that there are probably a lot of questions swirling out there about the change in treatment and our overall general life these days. When we heard waaaaaay back in June that we were going to have to switch treatments, we were all geared up for an immediate change to our lifestyle. And that didn't happen right away- we traveled and were more busy than ever. Perhaps we, along with those around us, were lulled into a sense that things weren't really going to change. I think for those that stay in touch by reading the blog, this is especially true because when we read, it's tough to gage the real tone or intentions sometimes.

As Dan wrote in his last blog, the decision was made to stop Tarceva (pill-based medicine) and move on to a more rigorous chemo treatment. The growth between the last scan two weeks ago and the prior scan in September was more than the doctors were comfortable with given the short time span. This, along with the return of the cough, left little doubt that it time to move on.

Dan will have 2 rounds of Avastin and Taxotere- the more traditional drip chemo that requires an IV. He had his first round today, and the next will probably be three weeks from today, assuming the schedule works out. Three weeks from the second treatment, right around Thanksgiving, he will have another scan to see if the treatment is working- meaning that the cancer is either stable or decreasing. This treatment regime is more severe than what he was on (Alimta) for almost 2 years. So, he may lose his hair and we will need to watch his blood counts more closely. I don't care about his hair- as long as he doesn't lose that smile that I love!

I know some people wonder why they can't just take the cancer out- I thought the same thing myself. Most likely, the could remove the spots on the liver. However, surgery alone wouldn't remove the underlying cause of the tumors which is why we need chemo. And as long as they aren't doing much damage, the tumors are actually helpful in seeing if the treatment is effective by monitoring their size.

As far as today- it really wasn't anything new. Dan has been at this on and off for almost 3 1/2 years, and I have been with him for all but one appointment in the past 15 months- we were on familiar ground with familiar faces. The treatment lasted about 3 hours, plus the normal time for bloodwork & processing. Aside from being a little tired, Dan is doing well, and we are waiting to see what side effects hit over the next few days- Dan hasn't been on these drugs before so we aren't sure what we are dealing with yet.

You may want to know what you can do for us- We don't need anything other than 100% positive focus & prayers for good results in 6 weeks, and that the side effects are manageable until then. As Dan said- things will have to get worse before they get better, so we are trying to prepare ourselves mentally for even more down time in the weeks to come.

Emotionally, you go through the wringer a bit before stepping back into treatment. There are a lot of thoughts that make their way into your day- most of them aren't ones that are easy to share.

A few weeks ago, I was reading the blog of a pastor dealing with cancer and was reminded of the story of Pandora's box (which I think was really a jug). You may remember that the myth explained the origin of women. When Prometheus stole fire from the gods and gave it to the humans, Zeus enacted revenge. Zeus sculpted Pandora from clay and bestowed her with many wonderful traits- beauty, wit, cunning, charm, etc. He also gave her a jar and told her never to open it, and then shipped her off to Prometheus to marry. Prometheus didn't fall for it, but his brother did and married Pandora.

One of the traits Zeus granted Pandora was curiosity, and it eventually got the best of her. She opened the box and out flew hate, anger, jealousy, sickness, poverty and every awful thing in the world. You can imagine how horrified she was when she realized what she had done. Then she noticed one last little sprite struggling to get out of the jar. Deep down inside the hateful jar was the only thing that sustained humanity in its times of sorrow, pain and misery- hope.

I am sharing this story today, because it reminds me of two things. First- you have to get all of the negative out in times like this- they are in there and can be too much to hold back. And even though those are tough emotions to go through, hope will eventually sustain you. After all, it takes a lot of energy to deal with negativity and counter-act it. Second, it's much easier to hope for the best possible outcome. Even a little sprite like hope makes all the difference going up against the big guys.

As my mom said to me back when Dan was hospitalized at the end of April, when every single doctor (erroneously) told us the cancer had aggressively spread- there is nothing wrong with a little hope.

Sunday, October 12, 2008

New Treatment

I talked to my doctor at the end of last week. We both agreed to move past Tarceva. On Tuesday, I'll be starting Avastin / Taxotere combo. It's traditional chemotherapy in the sense that it is given in iv form. I'll go once every three weeks. We may eventually switch to a Friday schedule, but we just wanted to get started for now.

As they say in sports, Tarceva just had my number. I don't regret my decision to try Tarceva twice because at the time it was the right thing to do. When we first went through the decisions to switch once we realized Alimta was no longer effective, my doctor had recommended Avastin and Taxotere combo. Both of these drugs I've never been on before. Even though they are new to me, they are commonly used therapies in the lung cancer world. Their toxicities or side effects shouldn't be too bad. I'm optimisitic about being able to tolerate it without too many complications. Let's just pray it's effective!

Wednesday, October 8, 2008

Switching Gears

Unfortunately, Dan's cough has become persisently worse. It's unclear what the cause is- possible infection? pneumonia? reaction to Tarceva? Whatever the cause, this week has been the first time in a long while that we've been living with the physical presence of cancer. It's no fun. It stinks. Not only is it tough to sleep more than a few hours, but it's even worse for Dan b/c he hasn't been able to do much but relax because the cough is so disruptive. As I write this, Dan is off to pick up more cough medicine. Hopefully it works well enough to get him back on a more normal schedule.

Next steps- back to the oncologist on Tuesday. Chances are, the treatment will change. But right now, we are more anxious to find some relief from the cough. On the plus side, it has given us a chance to try some new soup recipes since soup seems to help. So if anyone has any good ones, send them our way. On tap tonight- stuffed green pepper soup. And yes, I do cook!

Sorry we don't have better news- such is life sometimes in cancer world. At least we get 2 installments of the Biggest Loser this week! So we'll be hunkered down tonight with Loser and the finale of Project Runway and soup!- not too bad.

In case you're wondering, Dan is picking Jerrell to take Runway. Note that his pre-season picks were booted off the show in the first 3 weeks. My pick- Kenley- made it all the way to the finale. Dan's TV picks are usually about as good as his football picks- and he was out of his football pool in week 4.

Tuesday, October 7, 2008

Rocky

We went to the Philadelphia Eagles vs. Washington Redskins game on Sunday. It was good to see my sister, brother-in-law, and nieces. Although the Eagles lost, the game was exciting and the weather was perfect.

The thing that sticks out most in mind, however, was during a timeout. Sylvester Stallone, or Rocky Balboa, came onto the jumbotron. With his hands taped and cut-off shirt looking like he just beat the Russian for the 2nd time, he said, “It’s not how many times you get knocked down, but how many times you get back up.”

This couldn’t be more true regarding life with cancer. The very nature of chemotherapy is to knock you down. To beat the crap out of you. To bring you to submission in hopes of killing off the bad cells. Emotionally, cancer does the same thing. It knocks you down. The emotional toll is a lot, not just on me, but on my family, friends, and even more so for Meg. No one or nothing can prepare you for it. You get knocked down again and again. You just have to keep getting back up.

Wednesday, October 1, 2008

More on the Marathon

So Dan “borrowed” my cancer-is-a-marathon-not-a-sprint analogy in his last post (what- did you think he comes up with these things all on his own?)… here is my point of view…

My whole life, I’ve been kind of a slacker. For those that know me, you may wonder how I can be serious about that comment. But I am a total slacker. I look at other people who actually make long term goals and work towards them in total awe. For me, the challenge in life has always been about figuring out how to do things and then, just exactly how long it will take to get them done. I joke that this is just fabulous time management, but really it’s just laziness or a form of ADD.

While my college roommates studied consistently throughout the semester, I would do almost nothing if I wasn’t graded on it. Then, two days prior to an exam, I would shift into turbo-drive and lock myself away until appearing at the test sleep-deprived & running on Mountain Dew and Hot Tamales. Usually it worked out pretty well. I even implemented this tactic while studying for my CPA (passed), getting through business school (passed) & completing projects at work (still here- for now!).

I’ve always been slightly irritated at myself for developing these habits. I think it started young when I somehow developed a massive hatred of running unless it was during a game. Unless I could score a goal or knock someone down, I had no interest in the actual training part of sports. Unbelievable for someone who played soccer year-round for 12 years. I still think that I could have been a much better player, student & worker if I’d developed a consistent approach to working towards a goal.

When Dan and I agreed that we were both indifferent about the last visit with the doctor, it wasn’t meant to suggest we’re also ambivalent. Rather, I think we’re now always busy preparing for the next thing. Prior to the Tuesday’s appointment, I would twist myself all up in a bunch trying to mentally prepare for whatever news was to come my way- if it was bad, I’d try to think of what questions I would need to ask or what I’d immediately need to re-arrange at work or in life. But on Tuesday, I found myself taking it more in-stride than before. Maybe it’s because we haven’t had much good news yet, so I’m becoming de-sensitized to things. But I think it’s more that we have to keep focusing on always moving forward, even if it’s at a slow pace, to really beat it.

This is a real challenge for me… long range planning. But I also think it’s the first time in life I’ve been truly committed to something 100%. Even if Dan was pronounced NED (no evidence of disease) tomorrow, it would not mean the end of our fight. There is so much work to be done, both for Dan’s continued health and for the overall war against cancer. It’s a marathon, and one race that I think I’ll actually stick with this time. Sure, there will be times when we "hit the wall", but that is when we can lean on each other to push through.

Tuesday, September 30, 2008

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...

Monday, September 29, 2008

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!

Friday, September 26, 2008

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…

Wednesday, September 24, 2008

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!!!

Monday, September 22, 2008

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…

Thursday, September 18, 2008

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!


Tuesday, September 16, 2008

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… “

Sunday, September 14, 2008

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.

Thursday, September 11, 2008

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
_

Wednesday, September 10, 2008

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).

Tuesday, September 9, 2008

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

_

Friday, September 5, 2008

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