It’s all worth it – now shine

If the 30+ minute conversation I had with a lady tonight was the reason I got metastatic melanoma, it was worth everything I’ve gone through.

The lady I talked with tonight has had several cancer diagnoses and was told her cancer is terminal. She’s already lived beyond what they first told her and she’s not sad about the prognosis, but as we talked, I watched hope light in her face.

She shared her story. I shared mine. She told me she wished she had started a fitness journey with her first diagnosis years ago. (She’s part of the LIVESTRONG at the YMCA program. Great program!) She doesn’t like the weight she’s at now, but is going through treatment and doctors tell her to not worry about her weight.

I told her what I did after my diagnosis – taking control of the things I could that might help in this battle – diet, exercise, rest, stress. I told her focus on being active and eating healthy and everything else will fall into place.

It’s true. Being active helps us sleep better, helps us function easier, helps us feel better overall. And even if her time is limited as the doctors say, isn’t making each day the best, most enjoyable day it can be, worthwhile?

I looked at her and I saw someone who could prove them wrong. That’s what I encouraged her to do – prove every doctor wrong. In the process she will make each day the best it can be, and that’s the most we can ask out of life.

Even before I talked with her alone at the end of class, I watched how the group of 11 hung on every word I said – because I have walked the walk they are taking now. And I’m still walking, still running, still exercising, still not giving up. Even as our time for the night was over, they seemed to want to listen and I wanted to fill that cup as best I could. As I watched their gazes hang on me, I couldn’t help but want to fuel their desire to beat this horrible disease.

There was the young father with colon cancer. His gaze never seemed to leave my face. Inside, I knew what he was feeling. He has young children. It doesn’t take much to understand that.

There is the woman with breast cancer that just had the lymphedema relieved by her physical therapist and has better range of motion and has seen the swelling go down in her arm so she doesn’t have to wear a compression sleeve.

There is the women whose balance is off and marvels at how I can stand on one leg.

I challenge all of them to keep trying and some day, they too, will succeed.

Success for them may come in many levels – walking the stairs with ease, doing daily functional activities without getting tired, running a 5K faster, proving every doctor wrong.

Never have I believed in people more than the cancer patients I come into contact with through my different fitness groups. Because they have nothing to lose and everything to gain.

As I talked with this lady tonight, she said that for a while, she had drive, motivation, to go out and do things – it almost sounded like a bucket list type of drive – but recently, that drive had diminished. Everything she really wanted to do before she died was too expensive. I reminded her there is untold value to small things in life.

These are the types of conversations cancer patients can have with each other, because we know what it is like. We are walking the walk.

You see, God seems to have this weird way of placing us where we need to be, but if we chose our own path, we’d never reach our full potential. I know I wouldn’t have.

Given the choice I wouldn’t have said, “Oh yeah, give me one dose of melanoma – make it metastatic in the lymph nodes while you’re at it.” Who the hell would ever ask for that because I clearly remember the dread that coursed through my body when I heard those words.

But God knew better. He knew I would be here, in front of this LIVESTRONG group, in front of the Beat Cancer Boot Camp group, in front of every fitness class I teach. I wouldn’t be here if I never had cancer. I couldn’t be a role model. I couldn’t be an inspiration. Not that I think I am, but it kind of seems to happen that way.

As I wipe a tear from my eye, I wipe away the irony that life reaches its highest potential when you are challenged the most – like a diamond.

So to all cancer patients I say – Shine! To anyone going through adversity of any kind – Shine!

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Minding life

Recently, I took a two-day training in the fundamentals of tai chi. While I never realized how exhausting and sore one can become through such a slow, meditative practice, it also made me realize how much I had started rushing through life again.

One part of that training required everyone to eat lunch mindfully – no talking, no devices, no reading. Only you, your thoughts and your food.

After I was diagnosed with melanoma that was how I ate my meals. Mindfully. I sat with the intent of enjoying the food in front of me and little else. Occasionally I might page through a magazine or book, but my sole purpose was to be present in the moment of each bite.

Then work and life gradually flooded back over me and I started working through lunch, eating while I finished a story or got ready for the next task at hand. Dinner became a rush of food stuffed between events or tasks. Even breakfast was gobbled down while getting ready for work.

What had happened?

I looked back at those days after my diagnosis and surgery when everything in life jumped out in living Technicolor.

As I struggled to find balance with the new fatigue treatment handed me, my mantra was, “it is what it is” and I got to things when my energy allowed. I wasn’t worried about balancing ten spinning plates at once like I used to before diagnosis. One spinning plate kept me mesmerized – and it was fine.

But suddenly, I had multiple plates spinning again, some faster than others, and I didn’t want any to fall to the ground and crash.

The tai chi instructor kept telling us we weren’t relaxed enough – you can never be too relaxed, she chided. Maybe that’s why I was exhausted after each day. Instead of relaxing and being mindful of each movement, I was trying to gain control, only to realize, it’s not mine to gain.

If I could control my life, I never would have gotten melanoma. True, I had control of aspects earlier in life that could have prevented my diagnosis, but then I wouldn’t be talking to seventh graders in a few days about the importance of sun safety. If I could control my life the way I thought it should be run, heaven knows where I’d be, but I wouldn’t be where I am today.

Part of being mindful to me is seeing and accepting subtle signs along the way. Those subtle signs led me to Beat Cancer Boot Camp, which led me to be a group fitness instructor, which led me to the YMCA, which led me to the tai chi class and many other things.

All those things have become part of the plates currently spinning in my life, along with family and my full-time job.

As I watch those plates spin, I have to be mindful of their rhythm and the energy needed to keep each in orbit. Within that rhythm, I’m sure there is space to sit and eat quietly, mindfully, restfully. I’m sure there is space to watch the robin sing outside my door each day, see the hummingbird dart back and forth for food and wait for the dragonflies to fill the sky.

Mindfullness requires breathing, following the rise and fall of your chest and abdomen with each breath. Letting that rhythm fill you, calm you. It’s the only way I have found to come close to the relaxed state needed for tai chi, needed to reduce stress, to survive.

While I am only a beginner in tai chi, I knew mindfullness when I was the sickest I’d ever been in my life. Why did I forget how amazing it felt to be alive when I was terrified of dying?

Tai chi involves achieving a relaxed state of awareness. My muscles haven’t forgotten how sore they were after those two days of training. However, as my leg muscles continue to heal, that big muscle in my head, lingers on the lost art of mindfulness and longs to find that relaxed state of awareness.

 

Four years

Four years may not seem like much. I mean, really, what is it? A student may finish high school or college. A baby has grown to toddler and learned to sit up, crawl, stand, talk, walk, run, laugh, reason and test their parents. The parents are seeing their baby disappear as a child emerges. Four years may not seem like much, but to them, this is significant.

To a cancer survivor, four years is a miracle, a blessing, a prayer answered. To a cancer survivor, four years is hope fulfilled.

On April 19, I marked four years since I heard the horrible words, metastatic melanoma. Had I known more about melanoma at the time, I would have been petrified, but as it was, the word metastatic sent enough terror through me. Spreading. My mind wondered, where, how far?

I remember the days before surgery. As I exercised, I did pushups and with every pushup, I willed the cancer cells away. I shouted at them. Told them, “You will not get away with this. Get back to this one tumor and don’t think of going anywhere else.”

I’ll never know if that worked, but only one of 26 lymph nodes had cancer. And that one lymph node was a beast, wrangling in all those unruly melanoma cells. I hope all my other lymph nodes took note, in case I ever need to call on them again.

But I have four years behind me. Four years and I have no evidence of disease (NED). We all have grown very fond of NED in my family.

Even more so than that, at four years, there is a sense of the pre-melanoma me returning, measured mostly by my physical ability.

I am without a doubt, stronger than four years ago, and I continue to gain strength. I am getting faster, despite age and other setbacks. And my confidence has returned. There still may be occassional bouts of anxiety, wondering if I can handle something before me, but those instances come fewer and farther between.

My four year cancer-versary was marked in other notable ways – in new beginnings.

At the end of March, I took a new position within our company, a promotion, to associate editor for the Wiscosin State Farmer.  It was an answer to a question I’ve had since my diagnosis. How do I continue to work and manage stress? Someone asked me today about the job change and I told them, I feel like I have my life back. Watch for a future post with more about that.

To me, however, a more significant new beginning was the start, this week, of the Livestrong at the YMCA classes I will be teaching.

I would not be teaching this class if it were not for melanoma. Strange, but true.

There are so many things I would not have done in the past for years, had it not been for melanoma rearing its ugly head. And I don’t regret any of them.

Actually, I embrace everything melanoma has brought to my life – the countless conversations with people about cancer, the opportunity to advance research by participating in a clinical trial (in essence to help someone else), the chance to talk to seventh graders every spring about sun safety and skin cancer, the opportunity to lead Beat Cancer Boot Camps and make cancer survivors stronger, to lead group fitness classes at the Mukwonago YMCA, meet a fabulous bunch of people and help them lead a more functional life. Mostly, the moments I lived completely, embracing every ounce of whatever that moment had to give.

Even the suffering, the pain, the setbacks. I embrace them all (although I have to remind myself of this at times) because overcoming these, gives twice the meaning to life. If life were easy, there would be no joy, but joy comes in overcoming insurmountable obstacles.

My cancer journey has lead me to places I’d never imagine. Never. Would I trade the uncertainty that accompanies every skin check, every lump, every scan? Probably, but I’ve travelled roads I could not imagine. I’ve touched lives I hadn’t even known. I feel like I’ve truly made a difference, in my own small way, and isn’t that why we are here?

Four years may not seem like much, but it has been more than a lifetime to me. Not to steal lyrics, but I’ve loved deeper, I spoke sweeter, I gave forgiveness I’ve been denying, because I learned to live like I was dying. That alone has been worth the journey and I don’t want to lose that lesson, because I would like to multiply four many times over.

So, as I begin my journey this week of helping other cancer patients gain a more functional, satisfying life, I look back on the lessons cancer gave me in the past four years and give a little salute. Without this experience, I wouldn’t be who I am today. And I don’t regret that one bit.

Four years may not seem like much. It seems like everything.

 

Running through melanoma … and lots of other crap

The snow started falling when we were in the beginning miles of the half marathon on Dec. 4. It was the “Last Call” half, the last chance to PR (set a personal record), last chance to give it your all, last chance to prove yourself as a runner. My goal was simple. Run and finish with no pain.

Pain and long distance running are close friends, but in the past three years, since I was diagnosed with melanoma and went through immunotherapy treatment, pain took on a new meaning. I ran through neuropathy, torn hamstrings (both), IT band issues and most recently issues connected to age rather than cancer – a bulging disc and spinal stenosis. I recovered from a stapedectomy and ran. I wasn’t about to let back issues sideline me, even when I spent the month of June in pain that made it impossible to sit or drive. After a full spine CT (a painful, horrible thing) ruled out melanoma, I was left to deal with the effects of living and aging.

I chose the route of physical therapy. While I am an active, strong person, obviously, something was still out of line, namely, my back. Numerous strengthening exercises, coupled with muscle release, and dry needling got me to the start line with a fair amount of confidence. I didn’t wear a watch, judging my pace solely on how I felt, on how my form was holding up.

In the first half of the race, a lady came up on my shoulder and we started talking, since our paces were similar. I told her my goal was to finish with no pain and briefly gave her my story to this point.

Everyone out there was running to beat their own demons. Everyone had their own story. There was the guy who ran past me wearing pajama pants and a backpack. There was the lady who ran with a walker in front of her. She would walk fast for a period of time then run, until she had to slow down again. There was the girl running her first half marathon ever. When she finished it was the farthest she’d ever run. There was the lady who pulled up next to me and struck up a conversation. She had a heart condition and had to watch her heart rate and her breathing, yet she was running 13.1 miles.

For those who have never run long distance, it is a mental/physical game involving many miles of training, diet, rest, carbohydrate loading, and then the mental game as you hit those last miles and your legs begin to feel like lead. The last three to four miles can be a challenge. Your legs say slow down and walk, your brain says, you can’t give up. I was fighting against pain that has plagued me for the past several years, making me wonder if would ever run a half again.

By the last half of the race, snow was beginning to accumulate. Bridges became slippery, but the snow sticking to branches provided a surreal environment and the flakes clung to eyelashes, glasses and hair. Last year, the last half of this same race was a combination of running and walking because of pain. I finished, but I paid a price.

This year, as I passed the same spots where I had to walk last year, I reminded myself to relax and keep lifting my knees and the rest would happen on its own. In the final stretch, I didn’t think I had anything left to give, yet, I managed to increase my speed, pushing to a strong finish. A finish nine minutes faster than last year. A finish faster than I’d run since the fall I was diagnosed with melanoma and started treatment. The third fastest finish since I’d started running half marathons in 2012. And with no pain, or at least very little. As I said, pain and distance running are companions on the journey.

It was the breakthrough I’d been hoping for since melanoma treatment took me down a different road and other injuries added to the detours. It was the breakthrough I’d hoped for to prove that cancer can’t win. That age doesn’t matter if you keep trying and stay strong. That the race will always go to the one who keeps running.

I know I couldn’t have gotten to this point without my physical therapists, Colleen, Jesse and Nate. I took pieces of everything they each taught me through the years and kept building. I know I couldn’t have gotten to this point without the determination planted in me by my parents and the work ethic they’ve instilled. I know I couldn’t have gotten to this point if I didn’t feel I need to be a role model to so many people, and I couldn’t let them down.

Every runner has his or her story. Every runner is running through some kind of crap in their life, yet they run. They run because of the crap. They run to survive the crap. They run to overcome the crap.

Finally, I feel like I might be on the other side of that pile.

 

Listening in quiet moments

I used to fear quiet nights, like they were statements pointing to a lack of value in my life. I knew at some point age would overtake body and quiet nights and a good movie might be the best I could hope for at that point.

I crammed as much into my life as possible, pushing physical boundaries to ridiculous limits, making myself think what I was doing was important, perhaps making up for lost time, perhaps, trying to prove self-worth. It’s not until you step away from all those distractions that you see the truth.

Tonight I sit with a glass of wine as I write this, relaxed and rested. For the past several years around this time I would have been buried, exhausted, and struggling to keep my head above water.

Those who know FIRST LEGO League (FLL) know what an amazing program it is for elementary and middle school kids. I lived it with my youngest son, from fifth through eighth grade. I watched him mentor FLL teams as a high school student, while I coached the high school robotics team. It’s a wonderful, experience for kids and adults who are involved with the program, which is run mostly by volunteers. Every year we would host regional and sometimes state tournaments, where I helped as judge advisor for several years – a very intense, sometimes stressful position. There is enough stress in daily life, without asking for more.

I do not regret one moment I had during my involvement with those activities for they were extremely rewarding and fulfilling in the way anything that helps another reach his or her potential can be.

I know now though, that the only true value in my life is being here for my family every minute that I can. For that, my decision last year to step away from the activities that stole so much of my time, energy, attention, and patience from my family, is the best choice I have ever made.

I apologize to my family, to my husband, for all the years they put up with the clutter and confusion and chaos I added to life because I thought something, somewhere was calling me – for what, I do not know. I’ve always believed God wants each of us to use our gifts as best we can. That is what I thought I was doing – although I prayed about it often.

As I told a friend tonight, my family is too important to risk spending energy on anything other than my health and survival. Melanoma is too beastly to think it will quietly slink away, with one surgery and a clinical trial. I am no fool. I read about the disease and the research and know the war that is raging within me, even though at this moment there is No Evidence of Disease. I am no fool.

I no longer fear quiet nights, for now it means recharging for a better tomorrow. It means I have enjoyed another day on earth. Tonight I sit and smile, knowing I have taken the best course for me at this time. I smile, perhaps because I know I did my best in previous years to benefit those around me, but now, my focus is my family, close friends, and little else.

Looking back, I wonder how I managed working, family and the many other things I thought were important. Who was the fool then?

I no longer fear quiet nights, for as a plaque on my wall says, “It’s important to make time for quiet moments, since God speaks in whispers and the world is loud.” God, I am listening now.