Wednesday, September 30, 2009

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."

Thursday, September 24, 2009

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.

Tuesday, September 15, 2009

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.

Wednesday, September 2, 2009

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.