Wednesday, August 1, 2007

Caleb Steffen, Superhero

One of the great aspects of Team in Training is that each TNT team runs for a sponsored patient. The sponsored patient is someone who is currently going through treatment or has gone through treatment for leukemia, lymphoma or another blood-related cancer. Our sponsored patient is six-year-old Caleb.

Caleb was diagnosed with T-cell Acute Lymphocytic Leukemia on July 15th, 2005, exactly one week after Scott was diagnosed with Hodgkin's. Caleb was four at the time.

Caleb's mom, Nancy, is running with the team and will be running the Nike San Francisco Marathon with us! I had the opportunity to run 14 miles with her last Saturday, and every time I get to know more about her and their family, I am more amazed. We talk about how our guys were diagnosed, their treatment plan, funny things that have happened during treatment, scary moments, and what the future holds. Last Saturday Nancy was able to tell our team that Caleb had his bone marrow aspiration and everything came back CLEAR! On Monday, July 30th, Caleb finished treatment!

Caleb's dad, Brian, often has Caleb and his little sister, Audrey, hand out water and Gatorade at one of our water stops during our group runs. It is so motivating to see them out there! Caleb and Audrey hand out cups of refreshment, play, hand out more drinks, play--well, you get the picture--they do everything other three- and six-year-olds do! It is clear that Caleb is determined to do everything other kids his age do, and that his family fully supports that. You would never know that Caleb had leukemia.

But there are those times when Caleb has struggled with pneumonia, side effects, and other bummers that go along with cancer treatment. Pneumonia is something that can be relatively easy for an otherwise healthy person to get over. But when your immune system is compromised and your blood counts are down, pneumonia is life-threatening. In fact, often times it's the pneumonia that claims the life of someone with cancer, not the cancer itself. My cousin, Kai, died of pneumonia while going through "maintenance" treatment for non-Hodgkin lymphoma. My dad, who is battling lung cancer, has pneumonia right now. It's scary.

The profile of Caleb that team members received says the following: "Caleb says the hardest part of having leukemia is mission school for treatment. He missed almost all of preschool during the 2005-2006 school year due to intense chemotherapy and radiation. He also hates the 'pokes' that come along with having blood labs drawn every week. The only good thing about all of the 'pokes' is the vast sticker collection he has amassed since treatment began. His favorite kinds of stickers are anything related to his favorite super heroes, Spiderman and Batman.

Caleb, I think you are a super hero. But even super heroes need help sometimes. So we will continue the fight.

Remember: Donate today! Help a super hero!

Sunday, July 8, 2007

How to Live Between Office Visits

My husband, Scott, recently had "check-ups" with his medical and radiation oncologists. Though Scott has been feeling well and we had no reason to think the disease was back, we were both nervous. All appeared well, they said. His medical oncologist said he would see him in three months, at which time he would either do a CT scan or a PET scan. His radiation oncologist said he didn't need to see him for a year! Though we really like these guys, we were excited that he was given a three-month furlough from one and a whole year off from the other!

Every time we go through this I think of a book that Dr. Bernie Siegel wrote, "How to Live Between Office Visits." Dr. Siegel is an oncologist who is best known for his book "Love, Medicine and Miracles." I recommend the book to every person affected by cancer and have given several copies to family and friends over the years. I remember several years ago wondering why he would need to write a book about living between office visits. I mean, you just live - hopefully with gratitude and a positive outlook, but just be glad that you are a survivor and live! Sounds simple enough, but now I get it. Now I get why he had to write this book. It's not as simple as it sounds. Survivorship is a whole separate stage of the journey.

Many cancer patients and caregivers live with anxiety between office visits. They try to put on a good act, like nothing is bothering them, they are happy to be cancer-free and they are "back to normal." But survivorship is a new kind of normal. Patients and caregivers have been fighting death, and then they are told "You won, we think. We won't really know for several years if you won or not. But for now, you won. But if you start experiencing x-y-z, come in so we can see if maybe you didn't win, really. And you'll have to come in every so often so we can check if you are still the temporary-hopefully-permanent winner."


Soon after Scott finished treatment and was feeling good, I encouraged him to get back to running or some kind of exercise. I told him that I would be happy to adjust my workout schedule, that perhaps we could alternate mornings or he could go after work while I made dinner or whatever. He tried to run for awhile, but his ankles, knees and hips hurt. He felt that this pain was a remnant from the chemo, and that his running days were over. Hmmm. I asked the oncologist if this could be so, and he said that yes, the chemo could cause atrophy of the muscles and that maybe running just wasn't the right exercise for him. He went on to say "But you are young enough that you are obligated to do something. Maybe biking or swimming. You have to do something physical."

Scott still hasn't figured out what that is going to be. We participated in a fashion show for Gilda's Club a few months ago, and one of the other survivors was a man who had been diagnosed with testicular cancer in his early 20's. He is a personal trainer and is developing a program specifically for cancer survivors to get their bodies back. I think I need to give him a call. We do have a health club membership, so we have access to machines, weights, swimming, classes, etc. In time he will find what is right for him. Probably when he gets sick of me nagging.

Survivorship is a pretty hot topic these days. It is what Lance Armstrong's Livestrong Foundation is all about. Because of research and new treatments, more people are surviving, and we're realizing that survivors need support too. You can't just say "you're cancer-free, see you in two months to see if you still are" and expect people to go back to living their life like they did pre-cancer. For many, cancer is seen as a chronic disease - something you live with. Don't get me wrong, survivorship for Scott and I is much less challenging than diagnosis, chemo, and radiation. It's just a stage for which there is less support - there is no plan to follow, no protocol. The only thing we know is when we go back to see the oncologist.

Today is actually the anniversary of Scott's diagnosis, and our son's 5th birthday. It is a day of reflection, gratitude, joy, and cake! It is a day of celebration. It is a day when we think about all we have been through and know that it was absolutely worth the fight. And as for me, I say a special prayer for those who lost the fight, who are not with their children on their birthdays or never had an opportunity to even have children.

So now, if you'll excuse me, I have a 5 year old who is really not concerned with what tomorrow might bring - all he knows is that it is HIS day and that there are presents on the table with his name on them. Hmmm, living in the moment - he may be on to something...

Monday, June 11, 2007

How You Can Help

I mentioned in my first post that I would let you know how you can help me reach my goal of raising $5000 for the Leukemia and Lymphoma Society, so here goes: I have a fundraising webpage at You can make a donation right there, using your credit card! It is so very simple, and it tracks my fundraising progress. Please give generously - it may come right back at ya some day, and even if you are fortunate enough to never have to deal with these diseases personally, I can't express in words how much every contribution truly helps.

Next post I will let you know how my training is going, and I may just throw in a story...


Monday, June 4, 2007

What is this all about?!

Welcome to my blog!

I decided to venture into the blogosphere to keep interested people up to date on my progress as I train for and run the Nike San Francisco Women's Marathon through the Leukemia and Lymphoma Society's Team in Training. Not only am I running, but I am also helping coach as "team captain!"

For those of you who are not familiar with Team in Training (TNT), it is a program where anyone (read: you don't have to be an athlete) can train for marathons, half marathons and triathlons while raising money for the Leukemia and Lymphoma Society (LLS). Participants receive coaching from certified coaches, group runs, as well as transportation to the race, hotel accommodations, a pre-race pasta party and a victory party for their efforts. Fundraising expectations vary, depending on the expenses. The LLS is careful not to spend more than 25% of their donated funds on administrative costs.

The first time I ran a marathon with TNT was in 1994. There were only three of us from the whole state of Wisconsin, and there was one race, the Los Angeles Marathon, in March. Now there are hundreds of participants and many races to choose from! I saw an ad in Runner's World magazine for TNT, and thought about my grade school classmate, Doreen, who had died of leukemia when we were in third grade. I called for more information, and they connected me with the Wisconsin chapter, located in Milwaukee. I was living in Marshfield at the time, but I made the trek to the big city to sign up and find out what I needed to do. I had to raise $2600 in order to be able to run the marathon. With the help of my then-boyfriend (now husband), Scott, I raised the money, made it through Wisconsin winter training (thanks to my treadmill, some movies, and Scott handing me Gatorade and Power Bars when necessary), and we were off to L.A. It was a great experience.

Over the years I knew I wanted to do another TNT event at some point. Scott and I got married, moved, had two kids, moved again, moved again, had another kid, and through all that we both switched jobs a few times. Then in 2004 we received a mailer from LLS that had their fall TNT lineup, which included the Dublin Marathon in Ireland. By this time I knew several people who were fighting, surviving, or who had died of leukemia or lymphoma, including my cousin, Kai and my good friend Andrea. I asked Scott if he'd like to do it with me - that he could go to all the group runs and I would stay with the kids, and that I'd do the fundraising. He agreed! I was also training for the Twin Cities Marathon, which was three weeks before Dublin, so I had a pretty intense training schedule. I woke up most days at 4:30 a.m. to get in my run before Scott went out for his run, so someone was always home with the (sleeping) kids. I sent out a lot of fundraising letters to family and friends, and sometimes when people would send a check they would tell us of someone they knew with leukemia or lymphoma. By the time we ran the marathon, we had 11 people we were running in memory of, and 10 people we were running in honor of. Every name was written on the shirts we wore. When we ran the marathon, it was the first time we ran together! We ran the whole distance together and celebrated with a Guinness or two afterward.

A little more than eight months after running the Dublin Marathon, Scott was diagnosed with Hodgkin's Lymphoma. Yes, pretty ironic. You never think when you are writing a check for a charity that someday you may be the beneficiary of that donation. After the initial shock, Scott called one of our run coaches and the person who leads the TNT program at LLS (Kim). Kim immediately sent a packet of information, including an application for financial assistance. While we were fortunate enough not to need the assistance, it was nice to know that for those who need it, it is available, especially since I have been working in the area of healthcare for the underserved for several years. I also talked to a patient services person who offered a care partner and support groups. The Society was there for us.

Scott went through chemotherapy and radiation. At one point during his treatment, Scott's oncologist said that new research had come out since the beginning of his treatment, so they were going to change course a bit. WOW! The Leukemia and Lymphoma Society funds a great deal of research and is responsible for funding research that has led to breakthrough treatments.

I am happy to say that Scott is doing well now. Unfortunately, while Scott was undergoing treatment, my cousin died of complications from non-Hodgkin's lymphoma and a long-time friend died from a rare form of leukemia. Another friend was diagnosed with chronic lymphocytic leukemia. It's as if leukemia, lymphoma and other blood-related cancers have become an epidemic! I just had to get more involved. I recently became a board member of the Leukemia and Lymphoma Society - Wisconsin Chapter. I am honored to serve such a worthwhile organization. I also decided it was time for another marathon! Which leads me to San Fran.

The Nike San Francisco Women's Marathon is not only a TNT destination site, it is a marathon benefitting the Leukemia and Lymphoma Society! This means that money from every entry goes to LLS. How cool is that? And here's something even cooler: it's on Scott's birthday! Is that symbolic or what?

So now that you have way more background than you probably wanted, I hope you will come back to track my progress in training, helping other participants, and fundraising. I will also provide insight on TNT as I experience it, and will offer bits of information on some of the diseases we are fighting.

In my next entry I will provide information on how YOU can support my efforts to raise $5000 to help fund research, provide patient support, and FIND A CURE!