Juggling Act

It's been a pretty exhausting few weeks. For lack of better planning, a couple of big events have hit all at the same time. First, we've been working on the scholarship program. And at the same time, trying to spread the word about the Waeger Cup in October. Add onto that a few work trips and trying to handle all of summer activities... yikes!

Since it's the first year that anyone but Dan has been in charge, I have been trying to figure everything out and make sure it goes off without a hitch. I knew a lot about NCCF, but Dan was always very adament about doing things himself because he never wanted to put anything off on me. Our scholarship applications doubled this year. I was so proud that we got a good response because it reminds me that we have a lot of work to do to help these young adult survivors who want to go to school. The need that Dan saw still exists. Of course now I want to raise more money so that we can make a bigger impact!!!! While there is a huge need for research and legislation, the beauty of NCCF is that we give out direct financial support. We know exactly who benefits from our fundraising. We know their names and stories, and can be inspired by their accomplishments. And there are so few organizations that do what we do.

We've just sent out the brochure for the Waeger Cup. I have been a little nervous because Dan wasn't the most organized person so I don't have a great distribution list. And because many people might not give without his name on an email or letter. Dan's story was so powerful. And now we need to tell his story, but also our own with respect to losing a friend, brother or son. I hope people will see that by connecting their story to Dan's, we can grow NCCF. I think we're starting to, but it's tough without Dan guiding us. But whenever I get discouraged, I think about the fact that Dan knew nothing about cancer or being a philanthropist when he was diagnosed. So we can figure it out, too. But it makes me nervous nonetheless. I am also not the best fundraiser. It is not in my nature to ask for help on anything. But, I also know that the biggest reason that people don't give is because they aren't asked!

So I've been running at full capacity. And am nowhere close to where I need to be, which is scary. Because Dan was the one who facilitated all of this last year. And he was on harsh chemo drugs and still trying to work full-time. I wonder how he did it. He just had a quiet drive. He could've asked for help or even scaled back. He could have gone on disability. That was never an option. I used to give him a hard time about not being organized enough. Right now, I wish I could just say how amazing he was. I still feel like I can't keep up with him! When I last wrote that people forgot how sick he was, it was because of what he was able to manage. And he was selfless at a time when most would need help themselves. I just hope if a few of us make just 1/10 the effort he did, we can carry the scholarship program and the golf tournament off.

For more info on the golf tournament, please visit here

PS- Just a sobering thought- I have been trying to clean out the house a little bit as NCCF has taken over. I generally haven't moved too many of Dan's things but I did decide to clean out a few things. I threw out about 30 bags of cough drops.... 30 bags that were stashed in various places. I don't miss that cough. How did he did he deal with it?

Man's Best Friend

I went on my first trip this week for work since Dan passed away. It was fine, other than my complete inability to focus in 3 hour meetings :) As usual, I picked up a book to read in the airport. It looked harmless enough... there was a dog on the cover, and it seemed like a light-hearted story about a dog, Enzo, & his family, told from the dog's point of view.

Well, wouldn't you know... about 20 pages into the book, the dog "smells" something weird whenever he is around his human mom, Eve. Turns out, she gets brain cancer and dies. Despite the "are you kidding me????" reaction, I finished the book. The remainder of the story for the dad, Denny, is much worse than anything I will ever go through (hopefully). But in the end, he triumphs.

Anyways, there was a line in the book that I thought was pretty spot on. When Eve passes away, Enzo writes "Eve's death was the end of her difficult battle. And it was the beginning of Denny's." Simple, but so true. The cancer battle doesn't end when someone's life does. There are many people, just like the people that still come to this blog, that are battling the emotional and mental scars left by the disease after their friend or loved one is gone. I think we forget about that sometimes because it's normal to be relieved when someone's death brings an end to physical suffering. We can be too quick to think that cancer has left our lives for good. As if death was a good solution. But it hits us- months & years later. However, although we love to celebrate cancer survivors, we don't really know what to do with those left behind who are still dealing with cancer.

I am continually surprised that every single cancer survivor who talks about their relationships during cancer say that it is harder on the partner or loved ones than it is on the one going through treatment. Dan thought so... he was the first to admit that he could talk to anyone with a personal diagnosis, but had no idea what to say or do for someone in my shoes. When you're the person next to the person that is sick, you don't really focus on anything in your own life, other than how the decisions you make might help or hurt an already difficult situtation. Of course the easy thing would be to say that all the attention is on the person who is ill, and the partner is just left to hold work, home, family & friends together all while living in fear that the person they love the most will be in pain or worse, leave them. But the thing I always struggled with the most is that I didn't know how Dan felt, in his life as a cancer survivor and as he neared the end of his life, someone facing death. There were things I couldn't possibly understand no matter how much I tried. There was no solution for that.

I never minded being in Dan's shadow. But aside from his cancer, Dan's personality was so magnetic and energizing, that it was also easy to be over-shadowed by him in everyday life. But I didn't mind that either. Because he had many qualities that I admired and could learn from... which is pretty rare in life. So when he died, it definitely marked the beginning of this battle for me. The battle to maintain my sanity and to make sense of what happened. The battle on his behalf to be part of the solution for many of the problems with cancer. And the battle to figure out who I am. Because if I know anything, it's not who I was.

So back to the work trip... prior to going away, we had to take one of those touchy-feely personal strength tests. I've taken them many times before, and I usually get the "analytical/intelligent/competitive" traits. So when I got the results this time, I was really surprised.

My #1 strength... positivity. My #2 strength... belief.

We were joking at the meeting that I should have become a social worker. My boss asked why I spent so much money on business school. I laughed, but it's pretty significant to me. On the one hand, I was pleased to see that after all this, my greatest strengths reflect those things in Dan that I admired. I didn't feel quite so screwed up. But on the other, uhhhhh..... maybe I am in the wrong line of work. And maybe I have a long battle to figure out what that is in a way that I can take care of myself financially and still want to go into work everyday.

It is a battle. Sometimes to the outside world, Dan's battle wasn't as evident because for a long time, he didn't look sick. He still went to school, worked full time, ran a foundation, golfed, dated, got engaged... but it was a battle for him. Shortly before he died, he said that people didn't realized that even with everything he was able to do, he didn't feel right for the last (almost) 4 years. He was sick, and he felt sometimes people forgot it. As with me, I've done pretty well. I've gone back to work, picked up Dan's foundation, gone back into life... but's it's still a battle. The tools I've always used to cope with life aren't the same, and maybe some don't exist. But it's also a battle armed with new strengths and a guardian angel.

Maillot Jaune

I am sure that many of you were paying attention to the Tour de France these past few weeks. And probably hoping (maybe expecting) that Lance would pull it off. I know I was! First off, I have a huge amount of respect for the event. Having been known to ride 112 miles in a day myself, I can't imagine doing that for almost 3 weeks, at a sprint & up mountains so steep that they can't be properly graded.

And of course, it's hard not to respect what Lance has offered to those of us dealing with cancer. Yes, it's not about the bike, it's about the yellow bracelet. The unity. The support. The belief in the word "survivorship" & in being connected to a community. You have pride in wearing yellow.

I have to admit, I wasn't sure how this year's Tour would play out, and whether I'd be disappointed if Lance didn't win. After all, we can count numerous failed comebacks. One where our heroes leave as gods at the top, only to come back as mere mortals.... Jordan, Favre... & for you ladies, Beverly Hills 90210. We almost cringe while we watch, wishing they'd left us at the height of their glory days.

Lance is different, of course, because he is no longer just an athlete with another flavor-of-the month cause. For many, he embodies what cancer survivorship is about. But for most of of the world, he is just a cycling champion, and anything but a victory would have been a failed attempt at resuscitating his career. Victory was expected for the vast majority of the non-cycling world. Then Lance fell and broke his collarbone. He was lying in a ditch somewhere in Spain in May, and probably could imagined a few other things he might want to do this summer than get a bunch of pins in his shoulder and keep training. Sprinting. Up Mountains. Against the weight of his cycling legacy.

Of course, no one person perfectly represents cancer or cancer survivors. I am sure some don't drink the Lance Kool Aid... they don't like or understand his politics, or would choose a different way to allocate the resources he has raised. He doesn't resonate with everyone. But he resonates with me. Because I can imagine what it's like to crash and be tossed in a ditch, and have your plans interrupted with something you have very little control over. And then, have to climb a mountain every day. In the past, you used to breeze up those mountains... it was your strength. You dug in and steadily made your way. Almost effortlessly. And now... you've been slowed & others are passing you by. You can see the strain on your face. You have a new role... you may not even be the best on your own team. Maybe you even have some doubts. Your weaknesses have been exposed, and you have to adapt to a new reality.

But you still have your moments. When you're as good as you once were... as good once as you've ever been (thanks Toby Keith). You sail up the mountain at blazing speed, unencumbered & fearless. The old you is back. But you also take the time to look around & interact with your fellow riders. You share the experience, and don't try to merely punish with a victory. You want the world to ride with you... to engage in the conversation. You become part of the team. You become more human... more relatable. You don't even have to be a cancer survivor (or co-pilot, like me) to understand what it's like when the game changes. You adapt or you fold.

So, yes, I wanted Lance to win. But I still get it. And I am thankful for the light he shines on cancer. I know Dan was greatly inspired by him. Through the Lance Armstrong Foundation, Dan was able to connect to others and participate in creating progress against horrid disease. LAF was such an integral part of his journey, and ultimately ours at the end of his life. From the tweets, to the video cards, to the emails... we felt very supported. If it weren't for LAF or NCCS, Dan's work, (which goes without saying)... I don't even want to know how we would've done it. We felt lucky to have them all on our team. I still do.

Maybe being human isn't so bad. After all, we all find ourselves in a ditch some days. But all that matters is that we pull ourselves out & up, and get back on the road. And wear a nice bright color to brighten our days.

PS-I have the LAF manifesto on my wall. It was sent to us, signed by the entire staff, during the last few weeks of Dan's life. For those that knew Dan & how he approached the disease, it should resonate with you as well.

http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661055/k.E8CE/Manifesto.htm

First Birthday

It has been a pretty tough couple of weeks. I suppose that I am thinking back to last year at this time when we'd found out that Dan's cancer has metastasized to his liver. It is hard to believe that this blog just celebrated it's one year anniversary. More than everything else, the blog has been a big part of dealing with what has happened for both Dan & I. Sure we wanted to keep people informed and maybe educate a few folks along the way. But the blog was always a place to go to share our thoughts & hopes. Very rarely did we share fears and sadness, because we had each other to lean on. We always wanted people to know that even with cancer and an uncertain future, we were still positive and still happy people.

This period has been unexpectedly rough. I think you feel like you should feel better every day. And some days you feel worse than before. I am reminded of Sisyphus, the character in mythology who was destined to roll a boulder all the way up a hill, just to have it roll back and have to start all over again. Don't take that to mean that I being negative. I just want to get the bolder over the hill... not to move on, but to stop being happy & sad all at the same time. I didn't even think that was possible. But of course, should give me hope that after all I've seen and what I've lost, I am happy. I really think that it's the mark Dan left on my life- the gift of happiness despite the odds & circumstances.

I spend a lot of time "doing"- yes, I keep myself pretty busy. But when you're always "doing" you don't take the time to "un-do"... and by that, "un-do" the sad thoughts. Because you just keep moving. I am not one to usually admit when I am sad or when something is bothering me. Dan & I are alike in that way. When he was getting treatment or having a really tough day, he would just retreat into his thoughts to focus on getting through, focus on being positive. That could be hard on me sometimes because I wanted to always hear what he was thinking... he was the one that always made me feel better. I could always talk to him. One of the best things about being with Dan was that he just let me talk or get things out. He never judged and always acknowledged what I had to say. As he'd say "get it out- you'll feel better. And I'll buy you an ice cream."

So, if I could talk to Dan, here is some of things I'd say that have been really hard lately...

1. I can't believe I will never say to our son or daughter "You look just like your Dad".
2. I really used to like watching you at the driving range. I always stunk and would let you hit more balls. It was great to watch you do something you loved and were good at... even if I was bad!
3. Guapo's just isn't the same without you. Neither is Rita's or Carmen's... I've swtiched my usual to your favorite- cherry.
4. Not hearing you say "Babe, whatcha doing? Where've ya been?"
5. Working on scholarships for NCCF and realizing how much of an effort it is. And to think back to you being so sick with chemo and insisting on scanning all of them yourself & getting them out. I have a whole new level of respect.
6. Getting to be a part of the work you did in the cancer community, and knowing that you'd be happy I was meeting people & connecting with others & trying to find my own way. Bittersweet.
7. Having people ask why I wear two bracelets, and have them look at me in horror/sadness when I say "my fiance passed away from cancer". It's impossible to do your story justice in a 2 minute conversation.
8. Realizing that by the end of the week, every pair of shoes I own, along with my bags, are right at the door when I walk in creating a hazard. It was the only thing that got under your skin.

So I'll see if sharing this makes me feel a little bit better. Dan always said you need a team on board to deal with cancer. And I still need that team, and thankfully, have this blog to connect with them. Sometimes I do feel like I am letting him down when I am not 100% positive. But he wasn't perfect, and I know he had his moments of doubt, too. And he always wanted to give people a realistic view of living with cancer. And I guess maybe I can do that living after cancer.

Pretty Cool

I forgot to mention...

Nike & LAF/Livestrong are doing something really cool for the Tour de France. You can send an email message or text message with a tagline that will be spray painted on the road during the tour. They will even send you an image of it and let you know when & where the message was placed.

You can learn more about it here- it's called Chalbot

http://www.nike.com/nikeos/p/livestrong/en_US/chalk_messages

Click on the left where it says chalk messages & you can enter your own.

I bet you can guess what I wrote!

Man in the Mirror

Don't worry- this isn't the Michael Jackson tribute post! But since they've been playing his music everywhere, I've been hearing this song over and over. (For the record- my favorite MJ song is "PYT" and favorite J5 song is "Blame it on the Boogie"). I feel like Dan would've written a blog about "Man in the Mirror" (maybe he even did, and I am losing it).

I just got home from a meeting at the Ulman Fund. I was asked to be on an advisory board to help evaluate programs and events from the young adult perspective. For those that don't know, the Ulman Fund is a great organization that serves the young adult cancer community. Lucky for me, they are also right in my back yard! It was started by Doug Ulman (now the President of the Lance Armstrong Foundation) and his family after he was diagnosed as a student at Brown back in 1997. I am always amazed at the power of a single person (or families) drive & determination. It just goes to show that you don't have to be a celebrity to bring about real change in the world.

But I digress. As I drove home, "Man in the Mirror" came on the radio. I want completely cheese out and write about the lyrics. But why is that the perfect song always comes on! Here I was, leaving a meeting where people are taking their personal experiences and using them to bring about change.

You all know I have no idea what direction my life will take. I have been thinking about something a lot, though. And it has to do with death, so don't be alarmed. I've been thinking about how much of an honor it was to be with Dan the last few days of his life... to care for him, and to be by his side at the end. Most people have their whole lives to get the toughness and the empathy to deal with that type of situation. Not to pump myself up- trust me, I doubted whether I could do it, and there were times when I wanted out. But even in the moments of doubt, I knew there was nothing I wouldn't have done for Dan and the trust he placed in me, I've been wondering how anything else can measure up against that experience... did I already do the most important thing in my life- help someone else at the end of his? What else can possibly compare to this?

Then MJ comes on singing about being the change you want to see in the world. And I think maybe there are more people to be helped, more important life moments. And not in the end-of-life, dramatic sort of way. But in using this new-found insight to connect with people who are going through any sort of tragedy. At our cores, none of us wants to be alone. And cancer is a lonely world at times. Grieving is intensely lonely. So maybe it's not about how much money I raise, or finding a job in the cancer world for me. Maybe it will just be using my story to step up for others and make sure that if nothing else, they don't feel alone.

I hope that I am onto something. I'd hate to waste a good MJ singalong.

Tears of a Clown

Up until this week, I've really been enjoying the swim piece of my training. Five weeks ago, I could barely do a lap, and last week I was up to 22. However, it seems like this week everything hurts. My lower back, my nagging foot issues, my calves. I was chalking it up to the normal training lull... until I hit the pool this week.

The past 3 days, I've had a lot of trouble with my endurance and breathing. When you're in the water and out of breath, you can get a little panicky (even if the pool is only 4 ft deep!). Today was my long swim- 25 laps ( a little over the distance for my event .6miles- trying to get up to a mile). And from the moment I hit the pool I felt like a rock with arms. But I kept on, slowly and trying to adjust my breathing patterns to get a little more air.

At one point I become very mentally frustrated. My thought was- how can I go faster if I can barely float?!?! Another lap went by, and I was increasingly irritated. You see, this training is my best attempt to put some order into my life, and have something to focus on... a purpose. After hearing this week from my physical therapist that I may need another 3 weeks before I can even run, I was already worried that I may not be able to participate. But I had been consoling myself with the thought that I could really work on my swimming and get decent enough that the run, not the swim, would be the challenge.

So as my mind started to wonder, I was worrying about what would happen if I couldn't finish the triathlon or even participate... because what if I sink in the swim! How can I go faster if I am just struggling from the get-go?

After another lap, I made the obvious parallel to the grieving process- how can I move on if I can still barely get up? The three-month mark has come and gone, and I find that this time is more difficult than the immediate aftermath of Dan's death. It's more quiet, life has returned to normal. Or at least that is what it looks like on the outside. More days than most, I keep thinking of the lyrics from "Tears of a Clown"... "If there's a smile on my face, it's only there trying to fool the public."

I've really been putting my best foot forward, keeping so busy that I am only home long enough to sleep most days. I tricked myself into thinking that I could be an A+ griever, flying through it like a champ. And while most days I do, I've been noticing lately that just doing the basics (work, gym, etc) is exhausting. I can go to work, but I am a mental space cadet. My absentmindedness is awful (and I've always had a knack for losing things)- I've lost my car keys (still missing), locked myself out 2-3 times, lost my credit card, lost my driver's license, forgot my car when I thought I'd walked somewhere, broken my phone... I know that these are all normal things that people go through, but it still sucks. Yes, it sucks. This is "suck" period. Yes, I said it, and I am not feeling sorry for myself, but it doesn't change the fact that it sucks.

I've been so focused on trying to figure out Meg 2.o and what shape my life will take that I have not allowed myself the time to just get up and get through the day and be ok with it. I am ok with this "suck" phase, bc it has to happen. But I want to go faster in everything, and it's just not realistic.

So I did finish the 25 laps today. It sucked, but I got through it. Just more slowly and with a bit more of a struggle than I wanted. Ain't that life.