And moving on...

Just a brief note to thank you to everyone who has written after my "rant" yesterday (as Dan termed it). I do think that when Dan has a down moment, I take it much worse then during my own. What I posted was a bit blowing off steam, and a bit of personal note to him not to put it all on himself. But as Dan says, it's nice to have this blog to put it out there once, and get on with the day without dwelling on things. Sweet release.

Also, we have a few things to get straightened out with insurance so Dan will most likely start on the treatment early next week.

Plenty of things keeping us busy this weekend- Nationals game, looking for houses, trip to see the Waegers and maybe a much needed beer or two :) Where did the summer go?

The Real Deal

One thing I think about when writing these entries is how far we should really put ourselves out there. You want to let people know what is going on. You want to be super positive 100% of the time. There is almost a pressure to deliver results. And then there is my belief that in the end, people don't really want to know the whole story. It's too frightening to go there. Think about the last time someone asked you how it's going- what would his reaction have been if you started going off about your terrible boss or financial situation? Probably shock because all he really wants you to say is "things are good" and move on. He doesn't really want to know the true story.

And with cancer, even if you ask, you don't have any idea what it's like until you live with it every day. I didn't, even though I had friends with cancer. On the one hand, you gain a whole new perspective. On the other, not too many people have that same perspective. So while you have a heightened sense of what is important & how precious a week can become, most people walk through life without the same sense of urgency. Those of us in the fight start to hold ourselves up to high expectations & put those on others. How unfair those who end up disappointing you when they have no idea!

I say all this not because I am upset at anyone. Even though some people haven't been present where we thought we would, there are more than enough people who, despite distance & personal circumstances, have reached out & haven't been afraid to ask how it's really going. Even though it's tough, it would be truly impossible to get through every day without someone sending good thoughts. We need those posts & emails to pick us up.

I say this because last night I realized how much pressure we feel in this situation, Dan moreso than me. We don't want to let anyone down. We don't want people to know we get sad & scared, and we cry. We want to deliver results. We want to juggle work, the foundation & treatments effortlessly & flawlessly. We wanted Alimta to work forever, and it's upsetting that something we were so positive about didn't end up providing a lifelong solution. We are nervous about the reaction to Tarceva. We are even more nervous that it won't work.

As you can see keeping this things between the two of us is a lot pressure to put on ourselves on top of everything else. I don't think it does anyone any favors not to acknowledge these things. So even though you may not really want to know, I'm telling you. Cancer sucks. It's scary & it's hard. And you need to be able to say it & move on to the next step. Let it out, take a deep breath & get moving again.

Chocolate Therapy

What would you do when you hear bad news? After the doctors, I headed to dinner at a restaurant called the Burger Joint. I scarfed down a bacon cheese burger with smoked applewood bacon, rosemary, and a special sauce, a basket of sweet potato fries, and a cold Sierra Nevada on tap. It hit the spot!! (http://www.burgerjointdc.com/). The funny thing is I had hopes of eating healthy and maybe even taking a jog. But when I got home, the thought of diving into a face full of unhealthy food was too appealing and the burger joint is conveniently 2 blocks away. Afterwards, I headed across the street for a small Chocolate/Peanut Butter cone at Ben & Jerry’s. I doubt I needed the cone, but when it’s across the street – why not?

As for the results, I’m not really surprised. There’s growth. Realistically, I expected the cancer to grow. Call me pessimistic, but I haven’t had treatment in 3 months. The mass in both my left lung and liver grew ½ cm. In June, the tumors measured 2cm in diameter and now they are 2.5 cm. It’s not aggressive growth or modest growth, but typical. The more disappointing news is that there is another spot on my liver (measuring about1cm).

What am I feeling? Cancer sucks. It’s preventing Meghan and me from leading the perfect life. I understand that nobody has a perfect life, but it would nice to have the mental freedom to plan a future. To plan a wedding. To plan more than just a two weeks at a time. Right now, I’m scheduled to go on Tarceva – 25 mg a day. After two weeks, I will increase the dose to 50mg and two weeks later to 75mg. This was the game plan which came from the doctor in Colorado and my doctor agreed.

I feel like others were hoping for something different, so I’m sorry to disappoint. Were you hoping for the cancer to magically disappear? I still am, it is just that my mind had already switched to being optimistic about Tarceva. So keep the prayers and support coming! Our next check point is October 14th!

Regaining Control

After being diagnosed with cancer, you tend to lose control. Immediately, there is chaos followed by a wave of emotions – usually anger, fear, uncertainty, and feelings of isolation. We gradually learn more about the disease. We learn about what it does, the side effects, and changes to the body. We get back that control, but it takes time. Life doesn't stop just because someone has cancer. Cancer becomes a part of our lives, but it is not the only part. Life will never be the way it was before, but we cannot surrender to the disease. We do our part, make our way, go to work, and enjoy our time with others when we can. It is a “tricky” time as Meghan says because the cancer is still in there. But we do regain the control. None of us are helpless. We have the support of others. We have the experiences from before to draw on. We are not passive witnesses to our own lives. After tomorrow, I’m still going to have control.

It's a Tricky Time

As Dan mentioned in his last post, we have a meeting with the doctor this Tuesday that will start the next steps in treatment. I think I've been in a happy bubble of denial. But as the time for Dan's next scan nears, I start think of the "what if's"... what if it's worse than before? We've adapted pretty quickly the past two months, but it hasn't been too hard because other than the doctors' telling us the cancer is in there, you would have no idea Dan actually has cancer. It's easy to trick yourself into thinking that there really isn't anything wrong... but when I'm reminded, it brings the waves of fear and sadness all over again.

I've been locked away at work this week, and haven't had much time to worry, but heading into the weekend, I find myself wondering if this will be the last peaceful time for us for awhile.

Catching Up

Art Competition:
Judging the artwork was a great experience. Seeing each piece was like meeting 600 new cancer survivors. They all had a story to tell. Hearing about their treatments, surgeries, and personal experiences created a guilty feeling then when I would issue a low score. However, as the judging progressed, certain pieces definitely shined. It was wonderful to read the narrative and see the art all come together. Who knew one could be inspired through art? The competition not just provided an outlet for those 600 entries, but engaged so many through a forum that even the toughest of men wanted to pick up a brush.

Baseball Fever:
On Tuesday, I headed to the red sox/orioles game. Unfortunately, the huge red sox fan (Meghan) had to work late, but it was nice to see my friends. I enjoyed a few Miller Lites and salty peanuts too! (Grammatically speaking is the plural form Millers Lite or Miller Lites? Just like is it Tours de France or Tour de France’s?) Normally, or at least over the past year, the cumulative effect of chemo created an increased sensitivity to sodium, salty or processed foods, and alcohol. I would have to shy away or at least limit my intake, but now that I’ve had a little break from treatment it was nice to indulge.

Doctor’s Appointment:
Scheduled a meeting for next Tuesday. I’m 90% certain we’ll go with the doctor in Colorado’s recommendation of taking the oral pill (Tarceva) again. I advocated getting another CT scan as well. It’s probably been 7-8 weeks since my last CT and it will be good to use as a baseline to be more precise in our evaluation and effectiveness of Tarceva.

Cancer at 15

Yep. That’s what the doctor told us. The news definitely shocked Meghan and I. What was I doing at the age 15 or 16? What was I exposed to?

This notion is difficult to comprehend, even more so when he explained that I was probably exposed to the carcinogens that caused my cancer even earlier. The youngest person he had ever seen with lung cancer at diagnosis was 26. I had the guy beat by 4 years……..lucky me!

His reasoning was based on the amount of cancer growth from the scans in Feb and June. If you recall from biology, the amount of time it takes for one cell to divide or for a group of cells (such as a tumor) to double in size is referred to as the doubling time. Every cancer’s doubling time is different and mine is a slow growing. That’s probably a good thing, but it also means that I wasn’t symptomatic for 7 years before I was initially diagnosed which is kind of scary. I’m not quite sure how to take the recent revelation. It’s mind-boggling and shocking and I really don’t know how to wrap my head around it.

Leroy

We just learned that a fellow cancer warrior, Leroy Sievers, passed away today. Leroy was an acclaimed news producer, working with Ted Koppel at Nightline, and more recently at Discovery. Leroy was diagnosed with colon cancer in 2001, and it recurred in 2005. Since that time, he wrote a daily blog about his cancer experiences at NPR. His words often made it easier for Dan & I to talk about cancer, and in many ways, he was the inspiration for us to start our own blog. Like Dan, Leroy is such a fighter, and his honesty about his cancer experience inspired and helped so many.

We actually met Leroy and his partner Laurie in the waiting room earlier this summer while waiting for bloodwork. We spent about 5 minutes talking with them, and in that short time, it was clear that we had many shared experiences, despite clear differences in age and background. I won't forget his incredible spirit during that brief meeting, despite his failing health.

Even though we barely knew him personally, Leroy was a true friend. We will miss him.


If you'd like to read Leroy's blog visit
http://www.npr.org/blogs/mycancer/

To read about Leroy's life visit
http://www.abcnews.go.com/Nightline/story?id=5197492&page=1

Vacation

Greetings from the middle of nowhere Colorado! We are about 3 hours south of Denver in beautiful mountain country. We've had a great time catching up with my friends from business school, and are getting ready for the wedding this afternoon. Yesterday, we went white water rafting on the Arkansas river- class 3 & 4 rapids. It was the first rafting experience for both of us, so we felt the need to jump overboard for the last 300 yards of the trip. Needless to say, it was the coldest water I've ever felt and I swam to shore as fast as I could! Dan fared better than I did, and floated down the river calmly. We missed horseback riding this morning due to the rain, so if anyone wants to go once we're back to DC, count us in!

As for the visit with the doctor... it was a good consultation. The doctor spent a lot of time with us looking at Dan's historical scans. We didn't find a miracle cure, but then again, we weren't expecting one. Many of you may not be aware that the survival statistics for lung cancer, even in a non-smoker as Dan, are dismal. So, we know that Dan has exceeded clinical expectations, although it's always weird to have that told to you. What this means is that the drugs that Dan has been on so far have worked well, but also that his cancer is very slow growing.

The doctor recommended going back on an oral treatment that Dan was on briefly a couple of years ago, but in a much lower dose. Dan had a bad reaction the first time he was on the drug, but the doctor advised starting at a much lower dose. He gave us a lot to discuss with our treating oncologist, so we will go back and weigh the options. The truth is, Dan will probably be on all available options in his lifetime, but the trick is figuring out in which order they should be administered. There is no clear roadmap, so we all have to work together to figure out the best path. And of course, we will need the continued support and prayers of as many people we can get since there is no quick fix. We will probably come to a decision in the next week or so.

Hope this post finds everyone happy & healthy and on vacation!!!

Tap the Rockies

This will be short since I am posting from my phone. We arrived in Denver safe and sound. We've been taking it pretty easy- shopping, dining, massage (for Dan) and taking in a Rockies game. We even managed a run for the first time in weeks. I attribute our poor performance on the treadmill to the thin air- not our conditioning!!! I was able to visit with my friend Jen whose wedding we'll be attending on Saturday. And we've been able to spend some time with Emily, Dan's former co-worker at NCCS, and her husband Sam. So it has been a good mix of activities and relaxation. We're excited to head down to Mt Princeton for rafting and the wedding.

Tomorrow morning we're meeting with the doctor which will be a new experience at a new hospital. We're feeling pretty good and looking forward to it.

Vacation (almost!)

Well, we've almost made it to vacation week, save for Dan's trip to NY for the art show. Of course, you can never fully take a vacation from cancer, but hopefully we'll get some much needed rest! We are headed to Denver, CO, and then onto Mt. Princeton for my friend's wedding next weekend.

As fate would have it, one of the top lung cancer researchers is located at the University of Colorado, which is a short drive from Denver. This doctor was also on the list of people Dan's oncologist has been consulting with over the past couple of weeks. Somehow it just worked out that we would be in Denver around this time- we certainly wouldn't have guessed back in January that the trip would serve dual vacation/cancer purposes. Just one of those things. We will be meeting with him Thursday morning. Which means that we're getting closer to a decision on treatment, and getting back into the fight.

So as I said, you never really take a vacation from cancer. For me, mentally dealing with cancer is like going to the beach. Some days, you can just watch the water peacefully from the shore. Other days, you might dip a toe in or wade in up to your knees. And there are days that the surf is rough, the waves are huge, and they knock you down. Just like cancer- some days, it's hardly there at all. Other days, a news headline or conversation bring cancer more to the forefront. And some days, cancer can be all-consuming and literally take you under. I guess I am just lucky that I have such a good partner in Dan, that the bad days don't last that long!

One a side note, I just read an email from a good friend who had just finished reading the blog for the first time. His comment was that I've been truly blessed. I am so happy that is what he saw, as that is what I think every day, cancer or no cancer.

What makes for good art?

Monet, Picasso, Van Gogh, and Rembrandt are just a few artists that come to mind. They are some of the world’s most recognized and popular. They have incredible pieces for which people flock to national museums, or in some cases even have their own. The artwork is amazing and a far contrast from anything I can create unless there is a stick figure museum? I couldn’t even keep up with Bob Ross from PBS on the days I stayed home from school (http://www.bobross.com/).

The question of what makes for good art is important because on Sunday and Monday I am headed to NYC to judge an art competition. My work partners with Eli Lilly & Company through a program called Lilly Oncology on Canvas: Expressions of a Cancer Journey. The biennial competition invites people diagnosed with any type of cancer, their families, friends, caregivers, and healthcare providers to express, through art and narrative, the life-affirming changes that give their cancer journey meaning.

My job is to narrow the 500-600 entries down to 200 in which experts will then come in for round 2. I know that beauty is, and always will be, in the “eye of the beholder.” But how did I get picked as a judge? Art to me is watching Brett Favre dodge 300lb lineman or Tiger Woods driving a golf ball 300 yards...

I understand that art should help you see the world in a way that you aren’t able to express clearly. I also know that art should tell a story and be inspiring or powerful. I’ve actually been to the Van Gogh and Rembrandt museum in Amsterdam, but I still doubt whether or not I’m going to be able to pick out a winner when I see one. The company has assured me that people are each unique in what they see and value in the world. I just hope for the artists’ sake that when I see the paintings there will be at least some sort of emotional response. Perhaps they will provide me with a cheat sheet? Any suggestions? The fate of the next Picasso (or Bob Ross) is in my hands...

Victory!

"This crowd has gone deadly silent, a Cinderella story outta nowhere. Former greenskeeper and now about to become the Masters champion ... He's on his final hole. He's about 455 yards away, he's gonna hit about a 2 iron I think ... IT'S IN THE HOLE!"

(That is from "Caddyshack" for those who don't remember Bill Murray's quote)

We have a happy household this evening. Dan's softball team, seeded last in the season-ending tournament, had two big victories this evening. Down a man, they beat the #1 seed, and then the #2 seed, to advance to the championship game. Unfortunately, Dan won't be able to make that game because we will be in Colorado on vacation. Just his luck.

But we've come a long way from the night we learned that we'd have to switch treatment courses. That night, neither one of us was sure that Dan would be able to finish the season. To be honest, we had the same knee-jerk reaction that most people would have when facing cancer for the first time. We talked about cancelling the wedding, asking for flexible work schedules and holding off on major commitments. That night the future seemed out of reach in some ways, even down to softball games.

The past 6 weeks have been a blessing. We've been busy beyond belief, but we've got our footing back under us. We've been able to enjoy what is in front of us, from softball to movie nights & eating Italian Ice, and to finally taking a vacation next week. If we'd known we'd be lucky enough to have this time, we probably would have been sipping fruity cocktails on the beach the entire time! Hindsight...

What I realized very quickly is that our future isn't on hold and we don't have to wait for a monumental event to signify new beginnings. We are building a great BIG wonderful life, especially in the small moments like softball victories.

Massage Therapy

Last week, Meghan and I were walking by a new spa and wellness center. It had opened just a few weeks ago, so I decided to peek my head in for a brochure. I’ve been meaning to get a massage for quite some time. Cancer survivors’ bodies get pretty beaten up. We go through a lot, but I’m sure everyone feels like their bodies are going through the same thing.

I don’t know that massage therapy will necessarily cure my cancer, but according to the American Cancer Society, “massage has been shown in several studies to improve quality of life and well-being. It is helpful not only physically but emotionally as it soothes the soul and the mind."

They had a discount running in August so I scheduled one for tonight. They also have a promotion that your first 4 classes are free. It’s really incredible and my options are: Hatha Yoga, Vinyasa Flow Yoga, Mindful Yoga, Padma Yoga, Mat Pilates, Yogilates, Tai Chi, Qigong, and even Belly Dancing or Hula classes. I don't know that you'll see me in a Hula skirt or belly dancing, but please let me know if you want to join or which ones I should sign up for?

Fabulous Friday!

Dear team Waeger-

We just returned from the hospital, and I am happy (relieved, too) to report that everything went as well as it could have... except getting up at 6am.

Going in, we were uncertain that the radiologist would be able to access the small spot on the liver since it sat high up on the dome and underneath the lung. There was a danger that if they had to go in from the top, that the lung could have punctured & collapsed (which can also be minor or major). Fortunately, the doctor & ultrasound technician were able to work together and find another way up under the lung. So with a little bit of collaboration with Dan breathing in deeply & holding his breath, the liver was pushed far enough down to get the needle in for 5 samples.

It was pretty amazing to see the doctor work- she was pretty determined to get the biopsy, had a great bedside manner and was very comforting and positive. She also allowed Dan's Dad (DTB to me) and I to sit with Dan and watch the whole thing. The 9 inch needle was a bit much for me, so I held Dan's hand and kept my eyes closed for the most part, but eventually was able to watch the whole thing on the ultrasound. After a brief stay in recovery, we were off for Italian Ice at Rita's and back home. The testing will take about 7 days, but we'll write more about that next week.

Dan feels pretty good, other than a sore chest (which is understandable after seeing that needle!). As we were waiting for our car, he looked me straight in the eye and said very matter-of-factly "I'm going to beat it". Just like as simple as that, and I believe him 100%.

We also got to stop by and see the wonderful, fabulous, gracious (I could go on) nurses before the procedure. As always, they lifted our spirits!!!! I am posting our picture below.


Hope everyone has a great weekend!