Monday, June 24, 2013

The Real Marathon: When Cancer Comes Back

I signed on to blog about insomnia and midnight snacking. It's 2:47 am and I just ate a spoonful of raw cookie dough. I thought I'd blog about healthy alternatives, since midnight snacking seems to be my thing.

Then I checked my email.

I haven't blogged all that much about my daughter's cancer here. Many of my readers know the story. Many of you followed it when it was unfolding. Others have learned of it since. And while I'm happy to tell and retell, I don't want to bore you.

My girl smiling through chemo!
But when I signed into my email and read a Caring Bridge update from a little girl who has now relapsed with AML for the second time, I couldn't bring myself to write about cookie dough.

My daughter was three when she was diagnosed with Acute Myelogenous Leukemia (AML). About 20% of kids with leukemia have AML. It's more aggressive and harder to treat than the form of leukemia most kids get (acute lymphoblastic leukemia). We were given 50 / 50 odds of chemo working. 50 / 50 odds of survival.

AML treatment is tough. The doses of chemo are higher than the doses kids receive for other types of cancer. It is very, very intense. Some AML kids go through bone marrow transplant (BMT) right away. My daughter did not. Her subtype was deemed "intermediate risk" so she would only go through transplant if her brother was a match. He was not.

He may not have been a match for bone marrow, but he was darn cute growing up in the hospital!
Even for the kids who go through chemo alone, rather than BMT, the chemo is very, very intense. The immune suppression is severe, just shy of that achieved for BMT. The potential for permanent damage to the heart or bone marrow is high. As a result, the duration of chemo is short. My daughter went through 5 consecutive rounds of chemo, each around a month apart. After these 5 rounds, the body cannot easily tolerate more chemo, more poison so to speak, so there is no "maintenance" phase that lasts for years as in other leukemias and solid tumors.

AML chemotherapy is so intense that most kids require a feeding tube. Thankfully, our kiddo only needed one for a short time.

This is why I named this blog "The Cancer Sprint". When we were in the hospital for 6 months straight, we constantly compared the process to a marathon. Even the doctors used this analogy. Funny, since neither my husband nor I were runners at the time. But once we were out of the hospital, even when we were going back for weekly rechecks, I realized that if our daughter was lucky enough to not relapse, 6 very intense months was, in some ways, much easier than years of less intense chemo. Or chemo and radiation. Or surgery and chemo and more surgery. You get the idea.

Our daughter's treatment was more like a sprint. One of those really awful short runs, maybe even a 5K, where you feel like you are gasping for air the entire way. You get side cramps. Your legs burn. But then it's over and you're grabbing a coffee and heading home to read the paper and do laundry. 

So when I read that the little girl who relapsed for the second time, I thought about a marathon. Her first treatment was very similar to my daughter's. That awful sprint. Then, like most kids who relapse with AML, she did so very early, within a year off treatment. At that point she had a bone marrow trasplant. Now, 18 months post-transplant, she will face another. She has been given a 30% chance of survival. She is five.

Cancer breaks my heart. It rips it into a million pieces. Not a day goes by that I don't appreciate every extra moment that that horrible six-month sprint to remission has given us. And not a moment goes by that I don't hate everything about what cancer does to children and their families.

My daughter is alive thanks to research that has advanced the way we diagnose and treat AML. Much of that research has been funded by The Leukemia and Lymphoma Society. There are moments when I feel so guilty for continuing to ask for donations. Then I read about a kid facing their second relapse. I remember that for every child that survives AML, there is another who won't.

This is why I train. This is why I wear a purple shirt when I run. This is why I will continue to come back year after year, event after event, and ask for donations.

So far, I've received $50 in donations toward my current fundraising goal of $10,000. If you are able, please consider making a donation on my LLS fundraising page.

Also I am having a yard sale this Saturday morning and Sunday afternoon and I am planning a Fall 5K fundraiser. If you are interested in coming to the yard sale or sponsoring or volunteering with the 5K, please let me know in the comments section below and I will respond below or directly in an email.

Together, let's make "Someday" today and End Cancer together!

Sunday, June 16, 2013

Father's Day: The Inspiration to Change

When I was little, my dad would flex his muscles and I was absolutely certain his arms were as big as Mr. T's.

Dad earned a master's degree in athletic training from Appalachian and worked for their football team for a while. Then the practicalities of having a wife and two young kids kicked in. He traded in sports for sales.

Sales meant taking customers to dinner and driving all day. Naturally, dad put on weight. For most of his adult life, he didn't exercise. He would go canoeing or we would take a family hike here and there, but we weren't one of those fitness families. That's just the way it was. 

Then one day, about 6 years ago, he decided to make a change. It seemed to come from nowhere. He sent out an email and said he was starting a blog. A blog about cycling. He didn't even own a bike.

I'll be honest, I didn't think it was going to stick. I was a pro. I had taken up exercise lots of times! An aerobics class for 3 weeks. A yoga class that I never went back to. Running. Weight lifting. I had given up on exercise more times than I'd started! Dad had no idea what he was getting himself into. And in his late fifties no less!

That's the thing about family and friends. We aren't always the most supportive people, are we?

So dad bought the bike. And the gear. And gadgets. And deep down I knew it would never last, but  hoped it would. I wanted my dad to be healthy. I wanted him to prove that you could go from lazy to active. I needed to see it was possible. And not just for him.

And dad did something amazing. He proved me wrong.

For some reason, the cycling thing clicked for him. He started riding with friends and before we knew it, he was going out for 18 or 20 miles. He even had an accident that required shoulder surgery, but that didn't stop him.

At the time, I wasn't exercising. Since giving up ballet in high school, I had had an impossible time sticking with any exercise regimen. And here was my 50-something going on 60-something father who was making it look like a cake walk.

Then my daughter got sick. Cancer derailed any hopes of exercise for a while. We threw ourselves into fundraising, though, and dad was there every step of the way.

He shaved his head for St. Baldrick's.

He came to Leukemia and Lymphoma Society events.

And, of course, he rode his bike to raise awareness.

So when I decided to run a marathon to fundraise for LLS, even though I worried a lot of people would think "No Way. She's not even a runner." I knew the thought would never occur to my dad. 

Yet I've never told him how much he inspired me.

Seeing him go from couch potato to cyclist proved I could do it. My dad had become the most fit person in the family. If he could do it after years of not exercising, we should all be doing it.

My dad retired a couple of years ago and now works at the Y and at his local community college. Among other things, he's teaching health, PE, and, you guessed it, spinning lessons. He's not only teaching spinning, he's teaching it to high school kids at risk of dropping out. Spinning lessons! None of that would have been possible for him 10 years ago. None of it would have happened if he had just continued on his comfortable sales path.

At some point in our lives we will all slip into a rut. For me (like my dad and many other Americans) that rut involved junk food and sitting on the couch. Now I know that's not the way it has to be. People can change. They do every day. And for those of you sitting at home thinking you don't have it in you, you do. You just have to find it.

Now we're talking about a Century Ride with Team in Training in 2014. 100 miles on a bike. Two years ago I would have thought there is no way. Now I know. It can be done.

Dad, we've got this!

Wednesday, June 12, 2013

Funding the Cure

At times, it feels like we started fundraising on August 18, 2008 and never stopped. At first we were the ones who needed help. I was only one year out of school and Matt was staying home with the kids. Cancer meant one parent in the hospital with the 3 year old and the other trying to keep up with a 15 month old. Between lost income, medical bills, and the added expenses of living away from home for all that time, we struggled. But so many pitched in and helped.

At first all I could think about was how would we pay back those who had done so much for us.

When our lives returned to normal, it became clear that the only way to pay it back was to pay it forward.

Some days I feel very, very guilty as I ask people to dig deep and give again.

Other days I feel I'm not doing enough. Those are the days when I remember how it felt. Hearing my daughter might die. Struggling to pay for expensive prescriptions. Watching her, so sick from treatment, struggling even to breath. But still smiling.

I will do everything I can so that no other three year old has to add the words "hospital" and "transfusion" to her vocabulary.

So I am back at it. My fundraising minimum for "The Goofy" is $3600, but my goal is $10,000. It's going to take a lot of work. There will be yard sales, and wine tastings, lemonade stands, and requests for corporate donations.

But, together, we will End Cancer. I believe in that goal. And I believe Someday is Today. There is no more waiting patiently for a cure. We must make it happen. Now.

And even if I hate asking, again, for a donation, I know it is the right thing to do. If you're able to help, please do. If you can't, please share this page.

Any donation, small or large, adds up.

Someday is Today.

Monday, June 10, 2013

A Case of the Mondays

Remember the movie Office Space? When the woman walks by and says, "Looks like somebody's got a case of 'The Mondays'!"?

Well I couldn't get her voice out of my head this weekend. Even though it wasn't Monday I definitely have a case of the Blahs.

I almost always take Fridays as a rest day because they tend to be long work days without lunch. But I always, ALWAYS, exercise on Saturdays. Not this weekend, though. Despite a shiny new training schedule packed with run-bike-swim, I just couldn't get off the couch.

I thought "Maybe I should give myself the weekend off. I can start from scratch on Tuesday. Maybe I need a break. Maybe I deserve a break." But that kind of logic is accompanied by anxiety. "What if 3 days off leads to 3 weeks. Then 3 months. Then I'm back in the same sedentary rut that I lived in before weight loss and marathon training!"

Other factors played into my lack of desire to exercise, as well as my anxiety over not exercising. The house was a disaster. Money's tight. I always feel like I don't get enough time with the kids.

Time. It's always at a premium. There's work. And the kids are out of school. And I am starting a new (exciting) volunteer position at LLS. Oh, and there's swim team and the neighborhood ladies group. Did I mention fundraising? I'm booked with meeting most nights of the week and my three days off are filled with appointments. It's simply too much.

And I know you have felt exactly the same. "There just isn't time to exercise! I'm too tired. Too stressed. Too..."

But Sunday was a new day. I woke up with the option we get everyday: to train or not to train.

I really wanted an entire day just with the family. But on days that I exercise, I'm a better mom, a happier wife, a better person.

So I got on my bike. I rode 14.5 miles. It was sunny, and warm, and beautiful. And I didn't regret it for a minute.

They say the hardest step for a runner is always the first step out the door. Have you ever regretted taking that step? I haven't!

Wednesday, June 5, 2013

Collateral Damage and Why We Train

When my daughter was diagnosed with cancer, merely surviving wasn't good enough. I wasn't willing to accept collateral damage. She had been perfectly healthy before cancer, and I expected her to be perfectly healthy after.

We all know chemotherapy carries horrible side effects. Vomiting, diarrhea, hair loss, infections. Yet we don't realize survivors often go on to battle long term complications even after their treatment has ended. This is especially true for survivors of pediatric cancer.

Almost 75% of survivors of pediatric cancer will go on to have a chronic health problem within 30 years of their diagnosis. Let's break that down. Three out of every four survivors will face a chronic disease by their 30s or 40s.

I couldn't help but thinking about this as I watched my daughter swim last night at swim team time trials. As she dove into the water, red hair tucked carelessly under her swim cap, you would never guess she was one of the few, lucky enough not only to survive, but to survive without complications.

We will cure cancer. I believe that. The tools are within our grasp.

We will find safer treatments. Treatments so specific to cancer cells, that they zoom past all of those healthy, developing organs and straight to the bad guys.

But the only way we will do this is if we continue to fight. Continue to spread the word. Continue to raise funds and awareness.

My husband and I are both currently fundraising for the Leukemia and Lymphoma Society through Team in Training. Why?
  • Innovative research and its real-world success in the pediatric population. Pediatric ALL and AML treatments have improved more rapidly than many other pediatric cancers over the past few decades. The reasons for this are complex, but I believe LLS's role in research has been a factor. 
  • Unparalleled patient support. In fact, I am starting to volunteer with the North Carolina Chapter's first connection program
  • Political action that has been invaluable in combating issues such as the methotrexate shortage which affected pediatric patients as well as prescription drug coverage issues that make safe and effective oral chemotherapy difficult for many to obtain.

I believe in LLS. Their impact is felt beyond the world of blood cancers. Their mission helps patients survive and survivors lead better lives. This is why we train.

Sunday, June 2, 2013

Inspiration: 70.3

When we lived in Madison, WI, I remember being stopped in traffic thanks to a 5K. I wasn't a runner. I wasn't even working out. As the runners ran by, I remember thinking, "Next year. Next year I'll do that." I'll start running tomorrow.

This happened several times. Even on the day of the Wisconsin Marathon. "Maybe I'll start running this week. I'd like to run a marathon."

If I did start running the next day, or the next week, it never last more than a day or a week or so. I knew the importance of exercise and a healthy lifestyle, but I couldn't make it happen.

Today, I'm taking the family out to cheer for the 70.3 Ironman (notice I am NOT calling it a Half!!).

I am already starting to think, "Maybe in a year or two or three. If I could just master the swimming."

The difference this time is that I believe it's attainable. I have found the formula. Set a goal (for me it has to be a race). Find a training schedule. Don't miss a scheduled training. If you miss a training, make it up. If things aren't going well, talk to your coaches or mentors. I've even found a swim coach.

I can't wait to cheer for the triathletes today and get some photos. But mostly, I can't wait to be inspired!