treated to death.

I have talked ad nauseum about hospice, end-of-life care and death with my friend Carolyn, and today I came across an article that was so wonderful. And it talked about many of the things she and I have discussed. Namely, Americans are being treated for incurable cancers til right before they die, rather than having those hard conversations with their doctors and urged to pursue hospice or palliative care. And many of those patients suffer and experience pain, and do not get to live their days out like they would have liked. They cited that 12 percent of patients who died from cancer in 1999 received chemo in the 2 weeks before they died. The article mentioned that Americans use sports and war metaphors in dealing with disease and cancer, instead of talking about death and how it is a natural part of life.

I have seen this myself. I saw how my grandfather was treated, time and time again for his mesothelioma and lung cancer, though we knew it wasn't making much of a difference. He got his chemo treatments, his Procrit, lost a ton of weight, lost his bowels and bladder in public, and in the process, lost his dignity and enjoyment of life. I was living in Florida at the time, and had a feeling he wasn't going to live til Thanksgiving, when I was slated to come up to NJ next, so I flew up Halloween weekend, after not seeing him since July. He was a shell of who he had been. He was just put on hospice, after years of treatment. He could barely eat, could barely drink, could barely breathe. He had moments of lucidity and moments of....well, it wasn't delirium, but it definitely was some sort of supernatural end-of-life thing. We talked about how he was "watching the wind" because he "couldn't go" until it was a certain way. Make of that what you will. It wasn't until he was on hospice that he finally got permission to relax and let go. I left that Sunday to fly back to FL; he died the following Saturday. He was on hospice for little more than a week. This isn't too far from the national average for hospice stays.

He missed so much because he was sick. He was too sick to go to my college graduation. He was in and out of care facilities. The day before I moved to FL, we had to take him to the hospital because his lungs were filling up with fluid. In my heart, I know it could have gone down a totally different way.

So when do doctors, nurses and nurse practitioners talk to their patients? How do we get the point across that palliative and hospice care isn't "giving up"? How do we convey that it's a way for the person to enjoy their life and the time they have left, rather than missing out on family gatherings, Christmas dinners and seeing their grandchildren? How do we admit that the treatment they are on might not be working, or may be of minimal value when compared to the painful side effects? There is no easy way. I know this as someone who has provided counseling to cancer patients, some of whom really needed help talking to their family about death. I know this as a health researcher, a patient advocate and a family member. It is not an easy set of conversations to have, and each person has to make a personal choice that is right for them at that time.

People may see it as "giving up hope", but I don't think it is. I think it is merely a shift in what we are hoping for. Let's hope for days free of crippling fatigue and vomiting. Let's hope for being healthy enough for holidays, or trips to places you've always wanted to go. Let's hope for quality time with loved ones and friends, days where honesty is spoken and we say everything we need to. We can hope for living life, not just prolonging survival.

KT Tape, where have you been all my life?

Some uses of KT tape.

Different colors of KT Tape. I'm partial to pink, myself.

I recently came across this kinesiology tape called KT Tape, and I love it. Kinesiology tape is flexible tape that can be used to support and stabilize tendons, muscles and ligaments. It can help prevent injury and speed recovery, and can be worn during any activity, even swimming, for days at a time. I've gotten back into tri training, biking, swimming and doing the elliptical, as well as lifting upper body weights, and maybe it's my nearly-30-year-old body, but my knees are a little achy. Although, my orthopedic surgeon also said that foot problems can throw off the alignment of the knees and hips.....so maybe my foot problems are why I wear the patellar tendonitis bands when I run. Or, uh, ran.

Anyway, this KT Tape is magic. Seriously. And it comes in pink! I apply it to my knee in the prescribed pattern, and it really does alleviate soreness and provide support. I love it.

learning to walk.

I finally got my air cast off on Monday! I had a feeling I would, and I was planning on going to the gym afterward. At my appointment, the surgeon told me that I was NOT to get on the treadmill and run -- or even walk -- because I could snap the metatarsal, as it is still healing and building bone. Daily activities are fine, but prolonged, excessive walking is not. He said I'll be running by fall, and like a little child, I could feel my eyes tearing up and exclaimed, "But you said I'd be running by July!" He said that in 4 weeks, after my next appointment, we could re-evaluate after looking at new X-rays. So needless to say, I've been continuing swimming, and added biking and the elliptical, as well as upper body weight lifting to my routine.

But there's the little problem of walking. I cannot flex my toes so much; this is normal due to the realigning of the tendons and ligaments. Soft tissue heals much slower than bones, and the nerves are rebuilding themselves. So walking is interesting. I cannot flex my foot and push off the ball of my foot with my left foot. So I end up walking/somewhat limping sort of slowly and overcompensating on my right side. Sometimes it's more pronounced than others, and I get self-conscious about it, because it's not apparent to everyone that I had foot surgery; I just look like I'm walking weird. So I am, essentially, learning to walk all over again. Talk about a metaphor, huh?

In the locker room today, there was a little girl changing next to her mom, and the little girl's locker was next to mine. I had just finished my workout, and the girl started talking to me. She was probably 5 or 6 years old, maybe 7, and she had Down syndrome. She reached into my locker and started playing with the lock, while her mother admonished her and I reassured the mom it was okay for her to touch it. The little girl started telling me about how she's changing back into her clothes because they're going out to dinner, and how much she loves pizza and cookies. I agreed that pizza and cookies sounded pretty good, and I love pizza. I bent down to take my shoes off, and the little girl leaned over so our faces were level and she said to me, smiling, "It's a beautiful day today." The sweetness with which she said it brought tears to my eyes and I said, "Yes, it is." As I was leaving, she called after me, "Have a wonderful summer!" That simple exchange made my day.

Delivering Happiness

Hsieh's Book

I received an advance copy of Tony Hsieh's new book, "Delivering Happiness", for me to review on this blog. Hsieh is the CEO of the website Zappos.com, which sells shoes, clothes and accessories. Anyone who's ordered from Zappos knows their exceptional commitment to excellence, the free upgrades to overnight shipping, and their sense of humor. This book tells the story of how Hsieh got involved with Zappos and built it to where it is today, including how he developed the workplace culture there. Initially, I wasn't sure if I would like the book, but Hsieh is so down to earth and unassuming, plus he's funny. He's developed a culture that people love to be a part of, and whose employees take pride in their work and learn more about themselves than they could imagine. Zappos is truly a unique and special place to work, and this book tells the story of the business from the beginning. Even if you're not into business, or never heard of Zappos, pick this book up - it goes on sale today, and it's well worth it! The lessons Hsieh outlines in developing a brand can be applied to life and how you treat others....which may explain the success Zappos has achieved.

Here is a link to the book's website where you can learn more about it, and here is Amazon's website where you can buy the book.

getting in the zone.

Last night was my first UNC Team Wellness multisport club meeting, and the speaker was a sports psychologist. It was a REALLY great meeting, I met new people, and the speaker was amazing. One of the things we talked about was positive self-talk. He said, "There are plenty of people in the world who are willing to beat you up. Don't be one of those people to yourself." And when it came down to it, all of us have doubts. All of us reach that point that our stomachs are churning and we're nervous. Personally, I am nervous every day, with my science classes and training for this thing called a triathlon. I think to myself every single day, in the pool or studying physiology, what the hell am I doing? Why am I doing this? I am terrified. But he said that being scared means you are accepting a challenge, something you've never done before, and that's AWESOME. Give yourself props for accepting a challenge and doing something new. That alone is something to be proud of. Amen, dude.

Granted, this is just a sprint-tri. I'm signing up for the indoor tri in November, and I'd really like to, years down the road, do a half-Ironman or Ironman. I mean, think about it - how amazing is that, to push yourself to the ultimate? Here's a video about it. I thought that everyone would want to do this, but apparently not! I don't know why I'm so intrigued by it, but I am.

if you let me play sports...

Sports has always been a part of my life. As a girl, I took gymnastics lessons; tumbling and flipping came easy to me. I'd do back walkovers up and down the lawn, practice back handsprings with my friend Nikki, and do flips off the diving board in our pool. In high school, I decided to take up tennis; after one year, I was playing Varsity. Being on the tennis court gave me a sense of peace - running the lines, laps around the court, practicing my two-handed backhand and popping open a new can of tennis balls...I loved it. I still do, although I haven't been on a court in forever. I planned my summers around tennis. Wimbledon would always seem to fall during tennis tryouts. I'd go to morning tryouts, come home and watch tennis and eat lunch, and go back for afternoon tryouts and practice. When I got to college, I contemplated trying out for the team, but was lured to rugby by the promise of parties after every game. Rugby was like no other sport - I would go back to the dorm after a game and party with black and blue bruises from head to toe, exhausted, and as happy as a pig in slop. Playing rugby was a badge of honor, that I was tough enough to play a sport with no timeouts, full body contact and tackling. And now, I have triathlon.

Due to my foot surgery, I am relegated to only swimming right now. But just getting my body moving again has given me back a part of myself. There is a large part of me that identifies as an athlete. It is something I am decent at. At a time when I am struggling in school - something preveiously UNHEARD OF for me - this makes me feel good at something. Most people are really good at something. I've always been really good at school. And when I don't have that, I'm a little lost. But sports makes me feel like I'm good at something again. Gives me a sense of accomplishment. Satisfaction. Even just entering the Wellness Center and locker room, I can feel my body relax, like this is where I'm supposed to be, it's familiar, it's natural. I'm a sports girl. The fact that I am (trying to) study for ACSM certification for personal training so I can work part-time while waiting on nursing school decisions is exciting for me. Unfortunately, I haven't really been able to even look at the ACSM books because of physiology. At any rate, I am getting back to my athletic self, which makes me feel good. As Molly Barker writes, it gets me out of the "Girl Box", those imposed restrictions that tell us we're not pretty enough, or thin enough, or good enough....or simply, enough. It brings me to my self. Which is what we all strive for, right?

tri training

So I've been swimming every day since last Saturday....and it feels great. I absolutely LOVE the Wellness Center, and have gotten exponentially better at swimming laps. I just needed to get back into it. I am more confident about the triathlon, and really looking forward to it. I got a bike and a helmet the other day, although I won't be able to ride until July. There's a peacefulness in the water that I love. I'd forgotten, though, how ravenous swimming makes me, and for the first couple days, I would be starving as I left the gym. Now I pack some trail mix, Gatorade and PowerBars in my gym bag, thankfully, so I won't be hungry on my way home. Gotta keep up my strength!

Seriously, though, I was talking with the head of aquatics, who used to do triathlons, and even he said that my dedication and perseverance in the pool will pay off and I will be back to my originaly strength - if not more so - soon. That felt good. I felt like an athlete again. I have an ad ripped out of Triathlete magazine on my wall that has a bunch of triathletes getting ready for the swim, and it says: It's all about making the start line. THAT is why I love triathlon. It recognizes even the hard work that someone puts into it. It's not all about winning; it's about loving what you do and working hard, and just getting to the starting line. You don't have to win the race, just be a part of it.

keep swimming....

This is the Ironman Triathlon symbol, the "M-dot". One day, I hope to do a half-Ironman, or even a full Ironman.

I got the pin out of my foot yesterday, and have to wear the air cast for another 4 weeks. So today I went swimming at the UNC Wellness Center, where my grandparents have very nicely paid for a month membership, since they have a pool and awesome, state-of-the art equipment. It really is an AMAZING facility, and I'd really like to write a lot so that I can maintain a membership there for a few months, especially leading up to the triathlon (it's somewhat pricey). But I swam in the pool there today, and it kicked my butt. I didn't realize how weakened I'd become since surgery, but I guess after almost 8 weeks of not exercising and not even walking nearly as much as I had been, I definitely lost a lot of strength. It was humbling, and upsetting, and frustrating. I don't like struggling as an athlete, but today I was struggling. It makes me nervous about the triathlon, even though I have 5 months to go. I thought the swim leg would be the one part of the tri that I wouldn't have to worry about, but now I'm wondering. Of course, I can't run until July, according to the orthopedic surgeon, so I'm thinking the run leg might be my most challenging. I am hoping that I have given myself enough time to train.

At any rate, it was really great to be exercising again. It felt natural to use my muscles, and feel the strain in my arms. The water has always been familiar to me; I had a pool nearly my entire life growing up, and I would spend hours swimming laps, diving off the diving board, and playing games with my brother and friends. Being back in the pool today felt nice, although I struggled.

As Dory from "Finding Nemo" said, "Just keep swimming...."

just call me Coach.

Girls on the Run!

Despite the fact that I am still wearing an air cast (surgeon said I should be able to run by July), I just signed up to be a volunteer coach in the fall for an organization called Girls on the Run. It was founded by a woman named Molly Barker (a UNC alum, clinical social worker, 4 time Hawaii Ironman triathlete and recovering alcoholic), and is quite possibly the neatest organization I have ever had the opportunity to work with. The program is a 12 week program for girls ages 8-12, and we will meet twice a week for an hour at a time, doing lessons on self-esteem, body image, healthy choices, and other positive, empowering themes for young girls. At each session, we do some running, and at the end of the 12 weeks, we enter a 5k (3.1 miles) race. Girls this age are on the cusp, they are looking into the "Girl Box", as Molly writes. But think back to when you were 8, 9, 10...before you were worried about not being "pretty enough", or "thin enough", or "smart enough", or "popular enough"....because you knew you WERE enough. Unfortunately, somewhere along the way, many of us fall into media traps of what is deemed "acceptable" for young women today. We get trapped in the "Girl Box", with its strict rules as to what is expected and what is accepted. We learn to be seen and not heard, to speak a little softer. We learn that the media slams women who dare to be a healthy size, rather than diet themselves into nothingness. Sports can change all that. I am so excited to be a role model and help empower these girls to love themselves, and make healthy choices for themselves. Athletics has always been part of my life - gymnastics, tennis, rugby, and now triathlon - and to share that with others is a gift.

I went into psychology because of Mary Pipher's book Reviving Ophelia. Though my life has detoured into pediatric oncology, I still have a strong interest in psychology (as I should, since I have a Master's in counseling), and I think this experience will teach me a lot. I'm sure that these girls will be teaching me, as much - if not more - than I teach them. I'm reading Molly Barker's book "Girls on Track", which gives some background on her own life and the development of the program, and it's pretty amazing.

these boots are made for walkin'

My air cast is a little shorter, but this is what my oh-so-fashionable aircast looks like.

I finally understand the impact of chronic pain or discomfort on people. It will be 6 weeks tomorrow that I had my foot surgery, and since then, I'd say a good 5 weeks at least have been marked by pain or discomfort every day. When there's no pain or discomfort, there is certainly inconvenience and impairment. 6 weeks without running or biking for stress relief. 6 weeks without taking a normal shower with both feet on the floor (don't ask). When you have pain or discomfort more often than not, it does a number on you. Emotionally, it wears you out. It really is exhausting, physically and mentally. Not being able to run and get rid of stress in that way has caused added stress and frustration, especially as the weather has gotten nicer and nicer. Physically, it stresses your body and tires you out. You have to plan outfits accordingly because the damn air cast is cumbersome, plan routes of activities and so forth because walking is hard and you can't walk fast, and don't forget to clean the open wound where the pin is still sticking out. And if you manage to stub your toe while wearing the air cast, like I did last week, well, then.....you're screwed.

I know people have it much, much worse than I do, and I shouldn't complain. I'm trying not to. But I've never been immobilized like this.....I see my surgeon again next friday, and hopefully, HOPEFULLY, after he takes the pin out, maybe I'll be able to bike....I'm not counting on it though. I have a feeling I'll still have to wear the air cast a bit longer.