Move Along

As I was going through some records, I came across a binder of Dan's medical history. He kept every insurance statement (even though I never understood who actually deciphers what they say), every scan report and every doctor's note. I read through the notes and the scans all the way back to his diagnosis in 2005. Of course there are the requisite medical diagnostics (height, symptoms, etc). But what struck me was the little details- the actual notes of the doctors' impressions of their interactions with Dan. I laughed out loud when one described his "faint dusting of light brown hair" (even that was generous). And I could tell how concerned they were with his situation. One called him an "unfortunate young man". One commented on his calm demeanor and outlook. Often these reports noted that the discussions did not completely center around prognosis, but rather, his golf game, graduate studies, family and travels. It was evident that his doctors felt compelled to remind Dan that the odds of his survival were minimal, but that they, too, were taken with his unfailing optimism and hope. Dan knew the odds, but he just kept going.

What always struck me about Dan was that need to keep moving forward. Or just keep moving. I remember reading in one of Lance Armstrong's books that after he was diagnosed, even after treatments, he would get on the bike or go for a walk. If he kept moving, he wasn't sick. Dan was always moving, always planning ahead and always scheduling things. If he kept moving, he wasn't sick.

I can't help but think that, on an evening like this, when the weather is warm and the sun is setting... he'd come home from work, and we'd head out on a run. He had been training for a marathon when he was diagnosed. Even though he knew he may never run that far again, he still wanted to run. So off we'd go on a little jog. It was never more that the 1 1/2 mile loop on a trail down the block. And it was usually only for 20-25 minutes, running for a minute and then walking for a two minutes. He'd tell me his lungs were burning. But he loved getting out. He even put a little training plan together to maybe get up to a 5k. If he kept moving, he wasn't sick.

I get it now. As with grief, you have to keep moving. If you keep moving, you won't get stuck. If you're moving, you can give yourself a direction. You're making a conscience choice to do something... anything. If you keep moving, you won't sink.

So I'm off to take a spin around the loop we used to run. Just to keep moving.

Spring Has Sprung

Well, there has been a lot of seriousness on the blog lately! Cancer, grief, mourning- can't get more serious than that, so I guess it goes with the territory. Some people may wonder why I'd want to be involved in the cancer movement at this point in life. Well, it's pretty simple. I need to know that people not only survive, but also live full and long lives after cancer enters their life. Dan firmly believed you could, but it's been hard to remember at points over the past few months.

So on this beautiful, fantastic weekend here on the East Coast, it's the perfect time to put the doom and gloom aside for a bit. A weekend of football, biking & bbqs awaits. Plus, it's the perfect weekend to put the windows down and the music up and sing along. Get out there and feel a little sunshine and shake a little of the grief off. A time to celebrate just being here, making it through this time!!!

I am going to borrow the rest of the blog with a recent email from Andre, one of the scholarship winners from NCCF. We became pretty friendly with him over the past 2 years, and he went through some tough times & dark days post-cancer. Well, I was happy to learn that Andre just celebrated his 4th anniversay of being declared cancer free from stage IV lymphoma. Yes! People are surviving! Living!!!! Here is the email I received from Andre after he'd learned of Dan's passing.

Meg-

When I heard about Dan I really didn't know where to start. In fact, I started crying. Why? Well, to be honest, if it wasn't for Dan and the NCCF I would not have been able to study abroad and see the world in Spring of 2008. However, just sharing this, I feel, isn't enough. I am desperately searching for words to truly articulate this being whom I never actually met. But has had such an impact on and in my life.

My journey for my education has been a long and tumultuous one. Supporting myself financially, emotionally, spiritually, and all the other "lly's" that I can think of as a cancer patient was painful prior to discovering NCCF. I was hellbent on studying abroad as a part of the Semester at Sea Spring 2008 voyage. I was searching online for scholarships directed specifically for students that confront and/or have confronted cancer. Lo and behold I stumble upon NCCF and I apply. Little did I realize the friendship that would blossom from this application. I submitted all documents and to my surprise a few months later - right on time before my deposit was needed I found out that I was a recipient of the scholarship. When I recieved the check for my program it read "André, you're an inspiration. Stay in touch." And I did exactly that. I emailed Dan while abroad and even sent a postcard from one of the countries - can't remember which one exactly. There wasn't a day I didn't think about Dan. Why? I didn't only think about how the scholarship benefited me, but I thought about, and still think about, how selfless Dan was to start this organization to help individuals like myself.

Upon my return from studying abroad I was ssssooo depressed. Anyone who has studied abroad may be familiar with the "reverse culture shock." Well, I had a serious case of it. I called Dan in tears approximately 3.5 weeks later. I was on the verge of a nervous breakdown, literally. And instinctively, I called Dan who helped me gain my composure - folks, I was going through it. Dan and Meg emailed me and called to make sure I was okay. As I slowly but surely came out of my slump I was able to talk to Dan on the phone about Semester at Sea, and not just the Post-Traumatic experiences of seeing 13 countries, seeing the beautiful complexities of world, and eating SO much food! I had a chance to apply for this years scholarship which I was awarded and encouraged to keep up the good work as I spoke to Meg and Dan on the phone. Thus, now having the honor of being a two time recipient of the NCCF Scholarship. Moreover, I told them of my interest and exploration of the dance program at my university. Dan said that it'd be nice to come to NYC and watch me dance. So maybe that's why it's quite challenging to fathom the reality of his transitioning.

However, even as I write this I think about the fact that he will in fact watch me dance, because as my grandmother told me, "You never know when you are entertaining angel." However, I beg to differ. This angel I am aware of.

Thank you Dan for being a light in my life and I promise to continue to keep your legacy and light lit.

Live, Love, and Laugh.

André

The Survivor Hierarchy

The other week I read a post from a young adult cancer survivor on Facebook. He was recounting his experiences at a conference where he was interacting with other young survivors. The point of his post was that, compared to the experiences of others, his cancer journey was "relatively" easy and when he compared his story to those of his fellow conference attendees, he felt that he could hardly call himself a cancer survivor.

Here is a bit of what he wrote-

"As the moderator of the panel, I told my story first. I spoke of my three months of high fevers, losing thirty pounds and night sweats. I spoke of being admitted to the hospital in January, having surgery and being diagnosed with Stage IV Hodgkin Lymphoma. I spoke of going through intense chemo for six months and how lucky I was to come back cancer free in June. I spoke of how I couldn't wait to finish treatment so I could start going to concerts and baseball games. Then my fellow panel members told their stories. I heard a story of at 32 year old who was diagnosed at 6 months old and spent the last 31 years going to doctors to make sure their hormones were properly balanced. I heard a story of a 20-year-old girl fighting breast cancer whose family carries a rare disorder that affects their tumor-suppressing gene. I heard a story of being diagnosed with neuroblastoma at age 6 weeks and still dealing with he effects of her treatment as a 25 year old. I heard a story of being diagnosed with three different types of cancer over the 28 years of this person's life.

As these stories played out I learned what the true definition of SURVIVOR is and that I’m not a survivor by any means. For me to have a six-month span between diagnosis and a clean scan doesn’t make me a survivor. Who the hell am I to complain about not feeling well for SIX MONTHS compared to the hell the last 30+ years these true survivors have been living in?"

Sorry for the long cut & paste but I was really struck by this because I had been thinking about where someone like me fits into the advocacy world. As a caregiver (BTW- I really hate that term!!!), and as one who saw the side of cancer that no one wants to ever see, I can't NOT be forced into action against this horrid disease. But at the same time, I am very aware that I will be one step outside the survivorship ring. After all, I haven't had a personal diagnosis. Yeah, yeah- I was certainly there and survived my own experience, but I didn't have the drugs pumped through me. I didn't lose my hair (though mine did turn really gray!). I didn't get rashes or edema, vomit, experience neuropathy, or have a belly full of fluid with a drain. I didn't die. I didn't have cancer, but it was there every day in my life.

So to come across a cancer survivor questioning his own place in the food chain... I really got to thinking. The cancer world is just like the rest of the world. There are politics and hierachies. There are competing agendas and people just pushing their own agendas. There will be people who compare and judge others. There is discrimination (welcome to lung cancer!). There are cute marketing slogans. There are celebrity endorsments. People want to make money. People want to be recognized.

The truth is- none of it matters. The young man who questioned his right to call himself a survivor is no different than me. No matter where we are in life, at some point everyone wonders whether they are worthy. In the cancer world, who cares if you are! Dan was the biggest survivor I know. Just because he is no longer here doesn't mean you remove that title from his list of accomplishments. I can't fret over whether someone would want to hear my opinion (you all know I am not afraid to bring it!). Change and progress isn't achieved by sitting on the sidelines waiting for someone to put you in the game. You just have to figure out how to get in that game.

So instead of wondering where I fit in on the cancer ladder, I am changing my attitude. I am just overwhelmingly HUMBLED by the obstacles others have overcome. I am MOTIVATED by their example. Some of those people are cancer patients with the physical disease. Some of those people are the friends and families who face their own emotional and mental battles. I've seen those people. I sat with them in waiting rooms at Hopkins. They have become my friends. I am one of those people.

Tweaked

Grief is an intensely personal journey. No two people cope the same way. However, I think everyone that grieves searches for something to make themselves feel better. And in the early months, it can pretty disappointing when nothing really makes you feel any better. I can see how people might figure- what's the use? So I take a different approach. Instead of searching for the elusive "feel-good" moment, I reason with myself that trying various activities won't actually make me feel worse. So if something isn't going to make me feel worse, I figure it's worth a shot.

So I've been at the gym pretty regularly. And even though I want to be lazy, I know that moving around for an hour or two won't ever make me feel worse. Well, that was until yesterday when, within 30 seconds of working out with my trainer, I came down too hard on a jump and tweaked something in my back. It's nothing serious, but how annoying! The worst part is that is made me short of breath as inhaling makes it hard to breathe. So all day yesterday I did nothing but pop advil and watch tv. I was so irritated that on a day when I had a bunch of things planned that wouldn't make me feel worse (gym, massage, laundry), the fates had a different plan. I just had to sit there and do nothing.

I don't really have that much to complain about in terms of an injury. I was up and monving gingerly today, though I won't be lifting weights this week. But as I sat there yesterday, I found myself thinking of all the days I would call Dan from work. He'd be on the couch watching TV, feeling lousy. And wishing he could just get up and do regular things. It was another "a-ha" moment. I wonder how many times Dan did things just because they wouldn't make him feel any worse. Everything was always worth a shot. For him, those long days weren't a gift. Just like for me, time isn't always a gift. It just needs to pass.

I Should Have Stayed Home

I'd like to think that time has been suspended the last four weeks. It's pretty easy to do but eventually, the routine of life catches up to you. The past few days I finally decided to do my spring cleaning and other normal chores. I need to rejoin the real world. This kick in the rear was sorely needed- you do not want to know what was growing in my refrigerator.

So today I went to the grocery store. I've been putting it off because Dan & I really liked going to the store together. We're those people who have to go up and down every aisle, even though we bought the same thing every time. Anyways, as I approached the checkout, I gasped out loud and my eyes welled up with tears. There, on the cover of a tabloid, was Patrick Swayze. He looked all too familiar to me- like an end-stage cancer patient. Given the state of the world today, I shouldn't have been surprised that the media would exploit his disease to sell magazines. I like a good gossip magazine, but these pictures were downright cruel and crossed the line. But they are the face of cancer.

Although I have mixed feelings about him, I was overwhelmingly sad to see him exploited. The end of someone's life is such a private & humbling experience, and he has lost the right to choose how he shares it with people. I feel so privileged that Dan chose to spend his weeks, and ultimately, his last moments with me. He put a great deal of trust in me by allowing me see him as vulnerable as he was and as sick as he was. Seeing the pictures of Patrick Swayze just brought all of those images back. And so there I was, with tears streaming down my face, totally irritated that I can't even go to the grocery store without being smacked in the face with cancer.

As I drove home, I was reminded AGAIN how cruel cancer is. Like Dan, you can have the best attitude, the best doctors, the best support system, a healthy lifestyle... it makes no difference. Sometimes you get shafted and get cancer anyways. Those that are fortunate to survive go through hell to get there. Chemo is pumped into your body for hours on end, hopefully destroying the cancer cells but also the healthy ones. Radiation literally burns you. Surgeries leave scars. But hopefully, the cancer tornado spits you out with no evidence of disease, but the evidence remains nonetheless.

And for those who don't survive, they end up praying that the cancer takes them quickly to minimize their suffering. It's not like the movies. A video montage with some meaningful soft rock song doesn't flash before your eyes. With Dan, I was terrified that it would be the cancer in his lungs that would take him (literally hardening his lungs until he couldn't breathe) or that it would get into his bones causing relentless pain. I suppose we're "lucky" that it was the liver that failed out of all the potential outcomes. Lucky- ain't that a kick in the shins. I don't feel so lucky now. Cancer ravaged his body, as it doing to Mr. Swayze. This disease doesn't discriminate. Death is no joke.

So sorry for the doom and gloom on this post. I generally try to be positive but sometimes the truth isn't pretty. In the movies or on TV, you can spot the cancer patient as the one with the scarf on her head or the one will slightly pale skin and an IV. These depictions often downplay the reality. If you want the reality, you can now find it at your supermarket checkout. So regardless of whether Mr. Swayze's lifestyle choices contributed to his disease, I can't help but be moved by his situation. Because even though he has all the advantages of celebrity, he is going through what millions of other people do when they succumb to cancer. It's painful and heartbreaking. It's lonely and terrifying. And it should be a private matter.

I should have used Peapod and stayed home to watch the Masters.

Grrrrrrrrrrr

Yesterday, I went to the Oriole's Opening Day. I didn't have too much interest in the game, other than seeing the Yankees lose. And of course, to see Dan's friends who are just a great bunch of people. Last year, Dan and I went to Opening Day in Boston. It was one of only a couple of trips we ever took that didn't have anything to do with cancer. I remember he was still recovering from chemo, and was so bummed because he wasn't feeling 100% to go on a mini-crawl that I had planned to show him all my old haunts.

It's hard not to be angry at cancer. Yet, if it weren't for cancer, I would never have met Dan since the only reason he moved to the DC area was to work for NCCS. When you are the healthy person in a relationship where someone is sick, life can seem completely focused on the the one who is sick. I used to joke (though sometimes I probably believed it) that our relationship was all about Dan. He would always hate when I said that, because in our daily life, he focused so much attention on me and being as normal as possible.

But it's true- people's first question when they would see me was "How is Dan?" Schedules had to made around chemo, and sometimes we missed out on events because Dan wouldn't be up for it. I can see how, if a relationship wasn't strong, cancer could cause havoc. Ummm- you better like spending a lot of down time together! And even in a strong relationship, anger and resentment appear. Yes, I was super angry at points... sometimes that Dan got stuck with lung cancer (you know you know way too much about cancer when you wished that it was testicular cancer or something "easier"- not that any cancer is easy, but some are much more treatable)... sometimes that Dan was so darn postive and focused, making it tough on myself and others to be vulnerable or outwardly concerned... sometimes that we were never told "you have 6 months to live, go travel"... and of course, we're all angry that he was gone too soon.

One of my good friends, a cancer survivor herself, said that she often thought that the cancer experience was harder on her husband than it was on her. She had doctors, nurses and all the resources directed at her. Yet, her husband (like many in his shoes) was kind of floating out there alone. But he was still expected to work full time and pick up all the slack around the house. It's true- there aren't a lot of resources other than support groups (which aren't even helpful for people, myself included) for significant others. Even Dan, who knew more about cancer than anyone, often commented that he could talk to any cancer survivor and offer advice, but when it came to talking to me about what I was going through, he was totally lost.

So yes, I was angry. And now, I wish I hadn't been at certain points while Dan was alive. But I also had a lot more insight into what was really going on, and the realization that no matter how hard we tried, Dan's odd weren't good and there wasn't anything I could do about it. But, I always come back to the fact that without cancer, I wouldn't have known Dan. And that, even if we'd known we were spending our last Christmas together or going out to dinner the last time, it wouldn't have made a difference. We're only human, and **newsflash** none of us are getting out of here alive.

Dan knew that he would eventually die of cancer. He just didn't know when. I think that is why he was able to live the way he did, with no regrets. Statistically, he should've died within 6 months of his diagnosis. Everything else was gravy. I think the anger that some of us feel is that we can't understand how he could just be so normal, and not let us in on what was going on in his head and not acknowledge how serious things were. But, it wouldn't have made a difference to him. He was probably angry at points, but he didn't waste too much of his time on it because I think he was keenly aware that he was living on borrowed time.

For me, the anger has given way to motivation. So I hope I am following in Dan's shoes with respect to when he was diagnosed. I am finally able to believe in a lot of things he said, as opposed to wondering if he was for real.

But I am sure he is probably angry at one thing- the Pirates were picked to finish dead last in their division... again.

PS- Was going through pictures and found some from Opening Day last year- Can you tell were at Fenway in April? Nice win by Beckett today!

Delayed Reaction

It's true- when you are in the middle of an intense situation, your perspective is definitely skewed. In our situation, it's probably better that we never really focused on just how serious Dan's illness was the last few months of his life. We certainly sensed it (my Giving Tree blog entry) but I don't know that either one of us ever truly acknowledged it. I'm not sure that it would have bought us anything. I knew what metastic cancer meant to others, but never applied it to us.

The other day I saw a picture of Dan the week before he passed. It was shocking to me to see how much weight he had lost... almost like I hadn't been with him through the end. At that moment, for the first time, I realized how sick he was. Obviously, as the person with him all the time, I was acclimated to his appearance and limitations. As his physical capabilites declined, I was somehow able to just see him as I always did... though it's clear to me now that I was compensating for the situation. A gift that my mind gave me.

As I move through my days, I've also been increasingly aware how many medicine bottles are in the house... empty pill bottles, half empty pill bottles, cough medicine... they are everywhere, in every room. I can't move the cough medicine stashed conveniently in the bathroom and kitchen. I am just so accustomed to seeing them. And of course, they weren't always there. Just in the last six months, when life was not about being cured, but about overcoming whatever physical challenge popped up.

In the moments when I miss Dan so intensely, these reminders.... the photos or pill bottles.... bring me back to the peace that he is no longer limited. He is not coughing or uncomfortable. His diet doesn't consist predominantly of smoothies and Ensure (that stuff is so gross, yet I can't throw it away). He was so sick, yet I never realized it until now. What a blessing. And I am only slowly realizing the impact of his illness on my own life. Of course, when you love someone, there is no other place that you'd rather be than right beside him. But I am noticing things I am able to do again that weren't always freely available... exercising, eating out, visiting with friends. I don't resent that those activities had all but disappeared those last few months. Rather, I am keenly aware that, now that I am able to resume them, I am a profoundly different person.

As I resume a more normal life, I am not tentative or remorseful. The days are tough, but I find that the few moments I get that I do feel normal are also happy. So even though I didn't realize how tough life was the last months of Dan's life, I am grateful that that "cancer" life resulted in the set point being in my life being happy. It would be easy to confuse grief with despair, but my perspective is not desperate. I am only more thankful and appreciative of Dan, and how knowing him, even as he neared death, changed my whole perspective on life.

PS- no karoake choice yet. I am still noodling. I may need to practice a few first.