Siblings

Matt often says "Ginger's a worrier." It's true. And I suppose the translation is that I'm anxious. It isn't a crippling anxiety, but it is pervasive. Running has helped to temper it.

My youngest son was 15 months when my daughter was diagnosed with cancer. He was an easy baby. We had even characterized him as "our easy child." I realize that probably wasn't fair to him or to our daughter. Yes, he was pretty easy as a baby, but parents and teachers should be cautious when categorizing and labeling children. Labels can become self-fulfilling prophecies - the problem child misbehaves because that's what they do, the well-behaved child suppresses emotions to fit the expected behavior only to take it out in other ways later.

But we are human and as humans we do categorize and label to make sense of our world. And until our daughter was diagnosed with cancer, she was the challenge (a spirited, red-headed three year old who refused to wear any clothes with buttons and who rolled her eyes when adults teased her) and our son was the easy child.

Cancer didn't immediately change things. Sure, our son could only stay in the hospital room about an hour on any given day because IV poles might go down like timber, but I said he was easy, not comatose. What 15 month old is going to want to check out the beeps of an EKG monitor, the buttons on an infusion pump, the inflating and deflating cuff on a blood pressure machine? And there were times when our one room "home" at the Ronald McDonald house was too confining for our happy toddler. But mostly he continued to be easy until we returned how, chemo over, our daughter in remission.

Somewhere around 2 years, he started resisting separation from me. At the time, I thought it was simply an age-appropriate behavior. Maybe it was. But whatever the case, he started crying when I left for work, resisting going to my mom, who had previously been his second favorite person in the world, and generally wanting to be held by me whenever I was close.

I don't remember all of the details of this, but I can safely say when we tried to put him in "2 day twos" (a small and nurturing preschool that our daughter was attending) it was a disaster. Matt was a "stay at home" and finally decided it wasn't worth the trauma.

The same thing happened when we tried three year old preschool, but at this point we had moved and had no neighborhood kid friends, so we pushed the issue. He was in an Arts based preschool that focused on development through play and creativity. Ultimately I think this was a positive move for our little boy, but the separation each morning was a challenge. It was worst when I took him, but he often cried if his sitter drove as well.

After a year of gradual improvement, I thought four year old preschool would be different. After all, he was getting older. Nope. We had the exact same setbacks, the exact same struggles to transition away from home and into school.

Then kindergarten.

Then first grade.

And now, 5 years post-cancer, my mom points out that maybe our little guy is carrying around post-cancer stress and anxiety. He's a "thinker" she says. (Sounds a lot like his mom, the "worrier", doesn't it?)

It hits me like a ton of bricks. How had this not occurred to me? He has always been more anxious about being sick, or about cuts or bruises or other blemishes than my daughter. "Mom, is it serious? Is it going to be okay?" He hates separation from me, when I leave for work or when he leaves for school there are tears or angry outbursts. He is very conscientious and worries if he leaves his homework at home or if he makes a mistake in his schoolwork.

Maybe this is who he is. Maybe this is unrelated to cancer. Or, maybe he is carrying around extra anxiety. After all, he watched cancer from the sidelines, helpless, not in the driver's seat like his sister. Maybe there is something to that.

I don't have a solution. I write about this not because I am certain that cancer is to blame, but because I'm so very uncertain. I write about this because siblings, often ignored in the battle against cancer, need as much if not more attention as their sick brothers or sisters.

Busy Mom Syndrome - A Pledge to Stop Complaining

I'm a mom. And I work. And I volunteer. And I fundraise. And, yes, I'm busy and overwhelmed.

I listened to (eavesdropped on) a mom at a birthday party today. She complained about how hard life was as a working mom. "That's the challenge of being a working mom." Something about selecting a jury after a piano recital. Evidently she was a lawyer. And very important, indeed. The mom she was talking to, a stay-at-home mom, said "Any mom," but the very-important-lawyer dismissed her and said, "I don't know." And on and on about her jury.

I immediately hoped I never sound like that. Then quickly realized, I do. Daily.

I complain to anyone who will listen. I catalog everything that has to be done and why nothing is accomplished. Excuses about housework. Homework. "Real" work. 12, 13, 14 hour days. Why dinner gets delivered by a man in greasy, red polo shirt. You know the man.

I've never picked a jury, but I've made an emergency c-section in a chihuahua sound like brain surgery. Want to hear about the schnauzer crashing from pancreatitis? What about the stray cat with a broken femur? Saving lives!

Really? Yes, I help pets. I do diagnose and treat illness and sometimes I save lives. But really. Let's not get carried away!

And it's fair to say that I'm busy and, lately, increasingly overwhelmed. But so is everyone else I know. Mom or otherwise.

And let's be honest, it's really, really hard to be a mom. But it's also really, really hard not to be a mom. Especially when you really want to be one. And your annoying, self-important mom-friends are complaining about how hard their lives are.

And it's hard to balance work and marriage. But it's also hard to be single when you want to find that special someone.

The truth is that I'm exhausted. And having a hard time staying on top of things - kids' homework and extracurriculars, the current big 5K fundraiser I'm organizing, my "Goofy" training schedule.

But I am so lucky to be able to do all of these things. To have a life so full of people I love, a career that is challenging and fulfilling, a passion for leukemia and childhood cancer fundraising and a community that supports it. Friends and relatives who will listen when I go on and on about how important and busy I am!

This morning I PR-ed my 5K and was the first place finisher in my age group. This is something I wouldn't have dreamed of a year ago. The rest of the day was spent helping kids with projects, birthday parties, hiking, and planning a huge fundraiser that will take place next week.

I'm lucky to have had the time to train for that 5K. I'm lucky to have kids who love school and want to spend their Sunday working on a project about Women's Equality Day. I'm lucky to have friends who invited both of my children to an amazing birthday party. And I'm really, really lucky to have a husband who cooked dinner at the end of all of that!

Yes, my schedule is overfull at the moment. But that's the last I'll say about it. I'm pledging not to complain for the next week. I will smile and move through each moment enjoying what I have and remembering those who are struggling through much worse. Who's joining me?

And if you prefer to complain, I'm here to listen. I probably owe you!

Why I Sprint

When I started this blog, the name seemed all wrong. I'd always thought of cancer as a marathon. And as a runner, I'm really pretty slow.

But if you took the time to dissect it, our cancer journey was more of a sprint than an endurance event. A crazy, intense, balls-out sprint.

6 months of high-dose chemo. Sprinting.
Dozens of medications, close to hundreds of blood transfusion. Sprinting 
Odds of relapse highest, by far, in the first year. Sprinting.

And sprint we did. Leaving the hospital just one day shy of 6 months. Still in remission at the one year mark, 18 months, then two years. Benchmarks were flying by us.

But even though our cancer journey was a sprint, I was training for marathons and halfs. I couldn't sprint if I tried. 

When I started running, my pace in my hilly neighborhood was around a 12 minute mile (and I was thrilled with that). I completed my first half marathon at an 11:01 minute / mile average. Some people say the seconds don't matter for longer distances. They are lying.

Over the past year I have gradually improved my pace. Some of this has been a by-product of running regularly, getting into better shape. But lately my improved pace has been driven by speed work. On Tuesdays I go out an run 400s. Yes. That's like running laps. While I don't always go to the track, I do run (balls out) for 400 meters, then repeat, then repeat again. It's exhausting. In fact, in the current humid hot weather, it's miserable. But it works.

Thursdays are tempo runs. I start slow and gradually build my pace to a comfortably uncomfortable pace.

Why bother with any of this? I'm never going to win a race. The Olympics don't lie ahead. Even with all of the speedwork, a 9 minute mile is a goal, not a reality. Boston doesn't seem to be in my future.

But I run. I run hard. And I do it because it matters. Each time I run 3 miles even close to a 9 minute pace, the pride is immeasurable.

There will always be faster runners. It isn't about them. Each day I get faster, stronger, better. Cancer may have made me tough, but cancer keeps me there.

Masks and Possibilities

When Lindsay was going through chemo, she was severely immune-suppressed. So severe, in fact, that she was required to wear a heavy-duty mask when she left her hospital room.

She hated the mask, but it was worth it for the rare chance to explore the hospital.

Yesterday was Lindsay's semi-annual oncology check up. She was coughing and had to wear a mask, this time to protect the kids around her.

                                         

She didn't love the mask, and I felt a little guilty making her wear it. For me, it brought back memories of masks worn years ago. Memories that I didn't feel the need to share with her. Memories of a time when a simple cold could have landed her in the pediatric ICU. Or worse. Today was about focusing on possibilities, not lingering in what was.

The outpatient clinic where Lindsay goes for follow up is in the hospital on the same floor as the inpatient wing. This is where we lived for something like 159 nights in the hospital. I can't help but feel a little nostalgic going back.

If Lindsay feels nostalgic, she's not letting on. In fact, she is more anxious now than she was when she was going in for weekly or monthly visits. Blood draw, temperature, physical exam. It could be a lot worse, but I'd never tell her that. She's earned her medical anxiety, and my job isn't to tell her how to feel. 

Two nights ago, the night before the hospital visit, Lindsay couldn't sleep. "Mom, I'm really scared." So to prepare, we talked through what would happen. "I'll wake up. Brush my teeth. Get dressed." What's next? "We'll get in the car. We'll get a doughnut (a hospital tradition). We'll drive to the hospital." Do you feel anxious when you think about the drive? "Yes." Would it help to take your iPod? "No. I'll take Harry Potter #7." Haven't you already read that? "This is my second time. I'm almost done. What if I finish it?" Want to take another book, too? "Yes. Then we'll get to the hospital. Elevator. Check in. Playroom." Don't forget vitals. "Oh yeh. Vitals." Does that make you nervous? "No. Blood draw. That makes me nervous." Okay, what can we do to help? "I can squeeze your finger." Okay. What's else?

The list continued and she didn't miss a detail. Anytime something in her listed made her nervous, she told me and we made a plan for what would help. She was noticeably calmer and she had a long list of strategies to help her work through her fears and anxiety. Then she took a melatonin and was able to sleep.

The hospital visit went off without a hitch. We met a new PA and saw our favorite oncologist. The CBC was flawless. The plan was made to reduce visits to once a year and we can start going to the long-term survivors clinic if we prefer. This clinic will screen for relapse, but will also focus more on screening for the late effects of treatment: heart disease, secondary malignancies, delayed or premature puberty, fertility issues, even dental issues. This list used to terrify me. Now I see it for what it is. A list of possibilities. Nothing more.

There are other possibilities too, now. The possibility that this will be a great school year. The possibility that Lindsay will earn a medal in her triathlon this month. The possibility that my two red heads will write a play tomorrow and it will be "dinner and a show" when I arrive home from work. The possibility that Matt and I will continue to fight for cures, that we will continue fundraising, and training for marathons, and spreading awareness to anyone who will listen. The possibility that we will find safer, better treatments. The possibility that we will end this disease once and for all.

Life is full of possibilities. We simply have to embrace them!

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!

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!

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.