Grey's Anatomy

It's no surprise to anyone that I really like TV. Having lived through this side of cancer, it's always interesting to me to see how the disease is portrayed on my favorite shows. For any of you that watched last week's season premiere of Grey's Anatomy, you'll be familiar with the storyline that involves Izzy who was diagnosed with stage IV melanoma. For those that don't watch the show, Izzy was diagnosed very late and the cancer spread to other areas of her body, including her brain. She is blasted with chemo, and her life is ultimately "saved" by a radical brain operation. I have been pretty cynical around the whole story line, because I had expected the show to just miraculously cure Izzy. But they didn't.

In a scene late in the show, Izzy and her new husband Alex are sitting in the oncologist's office awaiting the results. The doctor informs them that the progress in her cancer was fantastic and that it was now "manageable". Izzy and Alex look confused. They ask for a timeline. They want to know when she will stop chemo. And eventually it kicks in... Izzy will have to accept that she will need to live with cancer. She will need to live with chemo. She will need to live with no guarantees.

I know that feeling... when you realize that there is no timeline. There is only time. Forget statistics... you'd be planning a funeral way too early if you do for those with a stage IV disease. That is when you learn what it is like to live in the moment. And when you realize that the enormity of the disease can be too much. So it's easier to focus on what you want to have for dinner or scolding someone for leaving her shoes by the door. Every day is one more day. Forget the timeline. There is only time.

At the end of the show, the characters do a voice over as various scenes play out. Usually I think it's kind of cheezy, but this voice over really got me. So much so that I watched it several times to get it on paper. The topic is grief, and the words resonated with me.

"Grief may be a thing we all have in common, but it looks different on everyone.

It isn’t just death we have to grieve. It’s life. It’s loss. It’s change.

And when we wonder why it has to suck so much sometimes, has to hurt so bad… the thing we have to try and remember is that it can turn on a dime.

That is how you stay alive. When it hurts so much you can’t breathe… that is how you survive…

By remembering that one day…somehow, impossibly, it won’t feel this way. It won’t hurt this much.

Grief comes in its own time for everyone. In its own way.

The best we can do… the best anyone can do… is try for honesty.

The really crappy thing… the worst part of grief… is that you can’t control it.

The best we can do is try to let ourselves feel it when it comes. And let it go when you can.

The very worst part is that minute you think you’re past it, it starts all over again.

And always, every time… it takes your breathe away."

Hit 'Em Straight

Well, it's one week until the Waeger Cup! We should have a great turnout of about 150 golfers (remember to bring your wallets for the raffle and auction!). And PLEASE pray that we have good weather.

It's hard to believe that Dan will not be there (well, physically). The Waeger Cup was such a big part of his survivorship. It gave him something to look forward to every year, and was an opportunity for him to say thank you to all those that supported him, and in turn, his foundation. Now that I've gone through planning my first one without him, I am even more impressed at his drive and desire to make the tournament happen... even in the face of cancer. I am still not totally impressed by his organizational skills, but am a little more understanding now that I have a greater appreciationg for what has to get done.

I think back to last year. Dan had just gone through his first cycle of a tough chemo treatment. I did not think he would even make it to the Waeger Cup. He had no voice. His throat was so sore that he couldn't eat. And the cough had started, making it tough to speak. He wasn't sleeping much. His white blood count was very low, and he was afraid he might get an infection. It was the first time I had ever seen Dan "sick" through all of our time together. And I was scared. Because if Dan couldn't handle it, then well, "it" must be horrible. But he pulled himself together, and he went to the tournament. And it was a good day.

Later that night, we came home and tallied up the raffle and auction proceeds. We were so happy that we'd raised almost $30,000. Then Dan went into the bathroom. He came out a few minutes later, sat at the edge of the bed. He took my hand and said "Babe. I have to tell you something. I don't want you to be scared. I don't want you to be sad. But my hair is falling out." And with that, he put my hand to his head and I pulled a little tuft of his hair. It came out in a clump. It was soft. And of course, there really wasn't a whole lot considering Dan's follicly-challenged head. Dan had told me the story of the first time his hair fell out. But I never thought I would actually see it. If I hadn't known the week leading up to the tournament that he was sick, I sure knew it then. But I remember thinking... what timing! I was glad for him that he got to see everyone looking pretty much like himself, even if he didn't sound like it.

The next day, I was let go from my job. I'll try to stay classy about it, but let's just say it was a horrible situation handled very poorly by months that people I don't have an ounce of respect for in the least. I came home. I made myself a tuna melt and sat on the couch. A little while later, Dan came home and said "We'll go wherever you want for your job. Let's go to New York (I was in media at the time). I can get treated at Sloan." I mean- was he insane? No, he was serious. Even though I knew we'd never leave here, I was reminded that through all the craziness of his illness, I was still his first priority. And of course, the job loss was a blessing because I got to spend so much time with him over the next few months. Anyways, we pulled out the clippers and I shaved a mohawk into his head. As usual, it all ended in a laugh.

I am so thankful Dan was able to go to the Waeger Cup last year, even if he wasn't able to do as much on the course as he liked. It's only fitting in a way that it was the last time he ever played golf. At his own tournament, among the friends and family he loved so much.

Six Months

Well, I guess tomorrow is the official 6 month anniversary. Not that I am a big believer of really tracking these things, but I feel it's a good time to just reflect on some of the things I learned. And I need to force myself to sit still for a few minutes because I have been busy!!!

So here goes...

1. I think the best advice I got was that I needed to drink 8 glasses of water. At the time, I was really puzzled when someone wrote that to me, but in a seeming unmanageable situation, you have to start with the basics. Don't over-complicate your life. And focus on taking care of yourself, which includes eating and exercising. Of course, you can eat all the ice cream you want every once in awhile but not all the time.

2. I had no idea how hard these six months would be when I think back to wondering what they would bring just before Dan died. Months 1 & 2... I have no idea what I was doing. Months 3-4 were brutal (someone did warn me that these were the worst), and Months 5-6... you start to see the light. I will never, ever tell anyone I know how they feel. I will never presume to understand someone else's loss. I will never judge anyone going through something like this in terms of what they should or shouldn't be doing. Because I had no idea what to do with myself. You can't control the situation, so you just have to pay attention to what your gut says.

3. The administration that comes with death is just awful. Do yourself a favor, married or unmarried... get your house in order. Write down what you want done because you don't want to leave it to interpretation when you're. It cost almost as much for Dan to die as it would have to have our wedding. Ironic, sad but it's the reality. Get life insurance- you will need it! (note: we had it)

4. The worst part of the day for me was waking up. Just like Bill Murray in "Groundhog's Day", I would wake up, and hope for just a second that this wasn't my life, and then realize it still was. I hated waking up!!! What helped me- simple retail therapy. I have basically replaced (well, doubled) my wardrobe. First, I was obsessed with not wearing black. I wanted to always wear color somewhere. But then, about 3 weeks ago, I started to look forward to getting up & putting on a new outfit. Silly, simple mind games... but it works! I really am not a fashionista (I used to peg my jeans with rubber bands and wear shoe boots) but I have just embraced the fun of shopping and trying new colors and outfits I would never wear. Life is too short to wear black! Nurture the things that make you happy and give you a little joy.

5. I have no idea how to help myself, and no idea how to let others help me. Once I recognized this, and started to articulate it to others, I actually really started talking about what happened. As friends and family standing by someone like me, we just desperately want to do something. Just be patient. Even people like me will come around. Give us room. Let us know it's perfectly ok to say no to an invitation, or say yes and then cancel last minute. Sometimes social situations can be overwhelming. But keep asking... 3 months, 6 months, a year out. Don't forget- I'll live with my loss my whole life. It's natural for everyone to move on, but every once in awhile, remember I'm still grieving.

6. In the few weeks before Dan died, I wondered how lonely I would be and who would talk to me about Dan. I knew his family and friends, but they were his family & friends. I am so blessed to say that these people are now my family & friends. I have so much affection for the whole bunch, and they have been so wonderful. I am truly humbled by their support. I didn't doubt that my family & friends would be there, but they don't know Dan like his friends and family do. So unexpectedly, I've doubled my email contact list and there isn't a day that goes by that I don't talk to one of Dan's family or friends. My life is fuller & richer as a result.

7. I don't have to wonder what the impact of Dan's death will truly mean for me. I live it every day. My realism, type A personality has been tempered. I am now an optimist. Even when I don't want to be, I have a positive attitude. And I seem to have adopted a little of Dan's swagger. He was so at ease with who he was and carried himself the same in any situation. He left me with a little more confidence. My friend told me that I have gotten to the "I don't give a f***" place in life. This isn't entirely true... I just give a big f*** about the right things, and the rest I don't bother to entertain. It's really refreshing. And empowering.

8. I can't outsmart grief or sadness. They will come and go, and I just have to push through them. It's really easy to trick myself into thinking that I am doing things because they are what I truly want to do, as opposed to just filling time. It's ok. It's ok that sometimes, the day sucks. Or I am just really lonely. I hate those moments, but I don't ignore them anymore. We don't talk about death a lot. Why would we? But people like me need to have the freedom to say it- it's tough. It's hard. It's heartbreaking. It's lonely. It can flatten you if you're not careful. For me, the actual sickness & death was very traumatizing. There. I did it- I said all those things I hate saying.

9. It will get better. I didn't really believe it at first. But I've been able to enjoy things, laugh and have fun. I can even go to weddings and feel ok. I can go away for a few days and enjoy it. I can actually get things done at work. I couldn't do those things a few months ago. Some days, I feel remorseful that I am improving. But like I said in #7, I take a lot of great lessons and feelings with me as I go.

10. Cancer took Dan's life. But it's not going to take mine.

11. Write what you feel down. Then be BRAVE and say it out loud. I am still learning how to do this.

12. . I love you Dan. And I love my family & friends- including the Waegers and all of Dan's friends. I truly am grateful. And blessed.

The Furthest Point

It's hard to believe that it was been 24 weeks since Dan passed away... technically we've reached the six month point. I have a couple of observations about what I've experienced, so indulge me.

First, I really had no idea what was going to happen after March. The first two months, I wasn't working so it was really about getting through the day. I never once stayed in my bed all day and cried. It just didn't seem like a good thing to do. But I didn't really do much of anything- so I think it was pretty much a blur. Then you think it will start to get better around months 3-4. Those were actually the worst thus far. I wasn't prepared to keep going downhill. I wasn't prepared to go to work and not have any motivation. That was irritating. And it's only been about 4 weeks since I started to feel a little more normal. Really, you have no idea what it's like, and as it's been said many times- everyone's experience is different. I promise you- I will never use the phrase "I know how you feel" because none of us does.

The first 6 months- I think it's like the triathlon I just did. While waiting to enter the water for the swim, they corral you into large groups. I hadn't bothered to really look at the course, so I asked the girl next to me- "So we just swim out to the buoy and off to the left?" She laughed and said, "No, you take a right and swim waaaaaaay down and then all the way back." I was like- uh oh. I had done all my swimming in the pool, and had been swimming up to a mile. However, when you see the distance laid out in a lake... uh, yeah. Not the same. Looking back, if I knew how much distance I would have to cover in the past 6 months, would I have even had the courage to get in the water & begin the recovery?

But, I do get in the water. Convinced I was going to need to conserve all my energy, I went out all the way to the last point where I could stand and not have to tread water. I stayed in the back, not wanting to get kicked in the face (which happened later). And then- you're off. Swimming in murky waters. You can't really see where you are going and it's almost dark, with the exception of the 5 seconds your head turns to breathe. I start off swimming in one direction, and about a minute later I realize I am completely off-course. Crap- I adjust. Head back in the murky water. Just thinking- if I make it to the farthest point, that will be enough. So I kept swimming & readjusting, kinda irritated at my slow progress. I reach marker #1 and make the turn back. Now, if I can just get myself past the starting point.... this involves a huge wide turn, and probably another 2 minutes correcting myself. I went all the right, just to have to come all the way left and up in the same place I started.

Just like the last 6 months... I tried some things and for a few seconds , I was on the right course, and then I put my head back in the murky water. But I just have to keep going, because if I don't, I will literally drown- in the grief, anger, sadness, lonliness. I feel comforted, because I know that if I really need them, there are people there waiting to pull me out of the water. They won't let me drown. I may not need them because I want to finish on my own, but it's a comfort to know they are there.

Eventually I settle down during the swim, just picking out little points to get to, and just grinding it out. Then, I finally realize I might just make it out of the water without drowning. And it's pretty emotional. I try to pass a few people and eventually do. All of a sudden, I am out of the water, running to the transistion. It wasn't pretty, but I made it.

Yep, that was the first 6 months. It wasn't pretty, but I made it. And with a little bit of momentum. I am not silly enough to think the hard part is over. Now it's about truly beginning my own life, and that will be equally hard. I will move much more away from the "Dan's fiance" label to well, just me. I like being known as Dan's fiance, but I can't say that forever.

So what the next 6 months will bring- I have no idea. I am smart enough not to place any expectations on it. But I have the lessons that I will take with me... I will drink 8 glasses of water every day (this was the best advice I got, meaning take care of yourself & the small stuff). I will wear lots of bright colors because life is too short to wear black. I will keep surrounding myself with my friends and family- the number of which has doubled. I will keep doing the things that make me happy. I will keep trying to figure out how to make a difference in the cancer world. I will keep Dan in my heart every day. And I will keep writing... so stay tuned.

Swim. Bike. Run.... Iron Girl

UPDATE: How could I forget this- also congrats to Dana for racing the Iron Girl. She did great, and raised a ton of money for NCCF along the way! THANK YOU DANA!!!!

Yesterday was the Iron Girl Triathlon. I am happy to say that I finished and achieved my goal of finishing in under 2 1/2 hours! I had been kinda quiet about the event over the past couple of weeks because I hadn't been able to dedicate as much training time as I wanted. And I was unsure of whether I would succeed at crossing the finish line. I just had my last session of PT last week, so I didn't run at all the whole summer. I could tell that yesterday when I got off the bike and my mind said "Go!" and my legs said "NO!".

It was a great day, and a great weekend. I spent about 2 days straight with 2 great girls- Anne & Laura Beth- and they really made the whole thing fun and an adventure. From wrangling the bikes on the top of the car, cramming 3 people in the front seat while driving back and forth all over Maryland & DC, carbo loading, going over race prep, watching people stumble home at 5 am while we were heading to the race, photo ops, seeing each other out on the course and watching them finish... we had a blast. And we're all ready to do it again!

I did the event with Team Fight, a group that supports the Ulman Fund for young adult cancer survivors. I have written about the organization in the past, and I can't say enough good things about their work and the people, who have become good friends and been so supportive of me sicne Dan's death. I was recently asked to be on their advisory board, and I couldn't be more thrilled to be involved in this cause. Every year over 70,000 young adults are diagnosed with cancer. The Ulman Fund does a great job of advocating for young adults and helping them cope with and beyond cancer. Seeing everyone out in their Team Fight jerseys yesterday and hearing all the support on the course was a huge motivator for me.

I raced for all my friends with cancer, and for those with family members as well. Hard to believe that 3 years ago I knew only 1 or 2 friends who had been impacted by the disease. Now it's dozens. I carried their names with me on a little piece of paper in a plastic bag. I also had Dan's mass card with me. I was reminded several times along the way of all the lessons I've learned from each. We all deal with cancer differently, but once it's touched you, you have such a respect and empathy for others who have gone through similar things.

The swim was ok. It was a little intimidating out there in the middle of 100 other women. Plus, I almost fainted when I realized that the bouy I thought was the turnaround point was just the first bouy. Aside from swimming massively off-course and getting my goggles kicked off by another swimmer, I had a good time. It felt pretty cool to get out of the water and run into the transition area. The bike was pretty fun as well. No problems there. The run was pretty tough. The 3.4 mile course seemed to be 80% up hill. Since I hadn't run but once the entire summer, I knew it wasn't going to be pretty. And even though I was sucking wind during the run, and was so much slower than I wanted, it was just important to keep moving and not quit. Once I hit the 2 mile marker, I was relieved. Of course there was a nice big hill to get up before the finish, but I made it. And it feels pretty cool to hear them announce your name!

But the biggest reason I did the race was for me. Yes, my training wasn't up to my normal standards. But it gave me something to focus on for me... not Dan's memory or Dan's foundation. I could truly escape into the gym or the pool all summer. There, I was just me, not someone who had experienced an a terrible loss or the girl whose fiance died from cancer. This experince- the lack of training & the injury- taught me that I can will myself to do anything. I may not be fast, but I will not quit and am not easily discouraged. I am willfully determined. I guess there is something about a triathlon that makes you feel a little bad a** (sorry for the language, but no other word would do). Go ahead world... bring it!

Here are some pictures. I was so lucky my mom came and was my photographer. And somehow she managed to spot me at each transition and right at the finish line. She gave me a great little boost every time. I have a great mom- the best!

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.