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.

 

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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.

 

For the record, or not

About a month ago I ran a 5K PR (personal record), beating a time from 2012 – before melanoma. Ever since my melanoma diagnosis in April 2013 I had been trying to get back to pre-cancer form and I did it – for about a day.

Despite any common sense, I followed that race with a long run the next day since I was preparing for a half-marathon in a month and it was the only day in my schedule for a long run. Bad idea. So bad I paid for it for the next month, putting in question if I could even run 13.1 miles.

I bounced back and forth between strengthening and stretching, ice and heat, trying to find the combination that would quiet the pain in my right leg, knee and calf.

A week before the race, I tried to run 11 miles. It didn’t go well, I blamed it on the dog and I spent the rest of the week wondering if I should downgrade to a 5K on race day. However, I don’t give in easily, not to myself, not to pain, not to physical limitations. Maybe to my grandkids, but that’s another story.

Here’s where the grace of God comes into play.

In my online feed, a video popped up from The Run Experience on Achilles running injuries. That video was the difference between me running 13.1 miles or not. I rolled out my calf and shin (intense stuff) like the video showed and noticed a remarkable difference. Enough difference to allow me to confidently go for 13.1 and not downgrade on race day.

I credit the rhythm of “Stayin’ Alive” for keeping me loose to the end, placing me third in my age group (surprise! but there were only seven of us) and most importantly, running my third fastest half-marathon time.

Granted, everything flared up again the week after the half, but I have purposely been easing my way back to running, trying to let my body heal so it’s ready for the next half in another month.

I measure my battle against melanoma through physical successes, always aiming for pre-melanoma times, back when I ran with little thought of the precious gift of movement and health. I never take into consideration aging unless it bumps me into a slower age group. I am always measuring myself against the me I remember before melanoma pulled on the reins and yanked the bit out of my mouth.

The thing is, I am now stronger and more fit in many ways than I was before melanoma, however, it’s the time on the clock at the end of the race that matters most, because that means I’ve truly won. I’ve won against time, age, treatments, neuropathy, bulging discs, spinal stenosis, and mostly, melanoma.

I still don’t run the way I wish I could, but I am getting faster. And I’m still running.

My first return to distance racing, I ran a half marathon with my daughter, Stephanie. It was her first half and I beat her by a good chunk of time. She kept running and getting faster with each race. The last race we ran together before my diagnosis, she beat me and it was the fastest pace I’d run in years. A month later I heard the words metastatic melanoma.

She logged her tenth half marathon this month. She keeps getting better with every race and is training for a full marathon this year. We finish in the top of our prospective age groups, with hers being much faster and bigger than mine. But ever since that first race together, as she improved and surpassed me, she’s always told me that she picked up the baton and litterally ran with it when I couldn’t any more.

It’s ironic. My passion has become her fire, has melded us together and provided countless memorable moments to cherish.

Should I measure myself by the time on the clock as I cross the finish line or by each step that has provided memories and fitness to keep me active and vital for my family? Either way, I’m not going to stop running or trying.

 

 

All I want for Christmas

On this day three years ago, our adorable, youngest grandson was born. He was our Christmas angel that year, born right before a snowstorm stopped the world for a day.

I remember when we found out our daughter was pregnant with him. We stood in their kitchen as the news of our oldest grandson becoming a big brother sank in and the realization of our family growing took hold.

We received that news sometime after I was diagnosed with metastatic melanoma – between the diagnosis and knowing the exact extent of the disease. At that time, my mind was still hung on the word metastatic, spreading. I smiled at the joyful news, but inside a part of me cried, not knowing how much of this wonderful new life I would get to see.

Today I smile on the inside too, after another clear checkup and NED (no evidence of disease) in my blood tests and scans. Perhaps another gift from a Christmas angel. Although antibiotics have not begun their work on the probable sinus infection causing the headaches I’ve been experiencing, at least it’s treatable.

I graduate to appointments every six months now, which is amazing and somewhat scary. At three-month intervals, I usually had something pop up around the time of my next visit. Now if something pops up, how long do I wait? As my oncologist said, “We’re still here,” but still.

The clinical trial I am in stretches appointments out even further after the next six month visit, to one year, however, my oncologist said we aren’t ready for that quite yet, which is fine with me. This is like weaning a baby off a security object.

Three and a half years ago, we were dealt the worst news a family never wants to hear. Two and a half years ago, I finished treatment and even now, I sometimes think certain issues are lingering side effects – like the headaches – although I pray the antibiotics knock it down and it’s truly only sinus related.

With more than three and a half years behind us in the cancer journey, we are cautiously looking ahead to the five-year mark and how we will celebrate that milestone. However, as each day passes, I remind myself, nothing is guaranteed. I remind myself of that tentative feeling in the pit of my stomach the day I first heard about our youngest grandson.

I’ve been blessed to watch him thrive and grow, and watch another addition to our family do the same. I embrace every opportunity to be with each of our grandchildren, loving them as deeply as possible in those moments, much like any grandparent might, but I know, I can’t waste any hugs or kisses or books read or movies watched or silly times together. Any of us can be gone in a moment, but I’ve been given advance notice that I don’t want to ignore.

Three years ago I held a little bundle of boy in my arms, crying at the miracle of birth, at the tenderness of life. Today I tossed him into a pile of cushions as he gleefully scrambled up and shouted, “Do it again!”

He will never know the stress our family endured in those early months of his life. Stress that tinged the most joyous news, with bitterness, but which now we wipe away with every report of NED.

What better Christmas gift can one receive than that?

 

 

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.

 

Measure of a year – or three – with melanoma

How do you measure a year, or three, in the life of a cancer survivor? 1,576,800 minutes is more accurately measured in daylight, in sunsets, in smiles, in laughter, much like the song, Seasons of Love (from the musical Rent), states. In memories, in moments captured forever for fear of never getting those moments again.

In truths learned (the harshest delivered exactly three years ago), in tears cried (there were many in those first weeks), in bridges burned (life would never be the same), but mostly life since my diagnosis of metastatic melanoma has been measured in love, endless, overflowing love.

As much as I wish I could see my future filled with the annoyance of complications from aging, I worry more about the chance of recurrence, wondering if a cough or lump should be checked. But the one thing melanoma has given my family and I is an unparalleled bond that would not have been welded if we didn’t stand before the black doors of melanoma.

April 19 will forever be an emotional day for me. I can’t seem to get through this day without a certain amount of sadness and a large amount of emotion. Three years out, when I toast to three years of beating the beast, I still see tears in the eyes of those who mean the most to me.

I remember the looks on the faces of my children that day three years ago, the comments and later messages shared. They knew the worst was possible. They knew they might have to carry on without me.

Going back to the song (Seasons of Love), it’s time to sing out – tomorrow I start a new venture in my life as a group fitness instructor, which strangely enough, resulted from my melanoma diagnosis (see previous post).

Our story never ends (as the songs claims) unless we allow that to happen. Our story continues on through everything we do in our lives and every person we touch, change and help along the way.

Share love, give love, spread love – cancer doesn’t stop that from happening. Sometimes, many times, it causes love to blossom.

Melanoma has changed me in many ways in the past three years. It has changed my family and my friends. It has shown us truly how to measure our lives, our years, in love.

Melanoma has brought me treasures and pains. As much as it has challenged my life, it has improved my life. Moments are more precious. Little things like a child’s laughter, a hawk in the sky, a rainbow, a dragonfly, take on enormous value. A moment visiting with a friend is more priceless than an extravagant vacation.

Three years after my melanoma diagnosis seems like a lifetime, yet it’s infantile. It feels like I’ve been through much – costochondritis, diverticulitis, three rounds of physical therapy, an ear surgery, and more muscle issues than I can count – yet it is so little in a fight against cancer.

Melanoma has tought me many things. Mostly it taught me to measure my life in love.

 

Seasons of Love (from Rent)

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets
In midnight, in cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty-five thousand six hundred minutes
How do you measure a year in the life?

How about love?
How about love?
How about love?
Measure in love

Seasons of love (love)
Seasons of love (love)

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand journeys to plan
Five hundred twenty-five thousand six hundred minutes
How do you measure the life of a woman or a man?

In truths that she learned
Or in times that he cried
In bridges he burned
Or the way that she died

It’s time now to sing out
Though the story never ends
Let’s celebrate
Remember a year in the life of friends

Remember the love
(Oh, you got to, you got to remember the love)
Remember the love
(You know that love is a gift from up above)
Remember the love
(Share love, give love, spread love)
Measure in love
(Measure, measure your life in love)

Seasons of love (love)
Seasons of love (love)
(Measure your life, measure your life in love)

 

 

An unusual door

Wow, it’s been five months since my last post. Crazy how time flies when things are going well. Not that they aren’t going well now.

As a writer, there are times you feel the need to be quiet. There are times you feel the need to speak out. I’ve never been one to say something unless it’s worth mentioning. As a journalist, one of the things I dislike the most is filling pages when it’s a slow news week (since I work for a weekly paper). It’s like making a silk purse out of a sow’s ear. Something I’ve done many times – and rarely enjoyed.

However, today, I fee like I stepped into a new chapter – it’s worth mentioning.

I entered the fitness world (industry) through an unsual door. Melanoma.

I’ve always been active. Growing up on a farm does that to you. You don’t sit still for long and that is not a bad thing.

I’ve been a runner since I was a teen and discovered I could cover a mile faster than most other kids my age. I was hooked. Suddenly I had an identity.

Yet, through my young adult, early parenting years and beyond, I ran because I needed that fix. I didn’t run, didn’t work out, to be fit.

Enter melanoma. And immunotherapy treatment that did crazy things to my muscles and joints, but ultimately (I hope) saved my life. But I never stopped. That wasn’t in my nature. I slowed quite a bit, but never stopped.

I joined Beat Cancer Boot Camp and loved it. I remember thinking early on how it would be so cool to lead this some day. Then my physical therapist, Colleen, asked me to sub for a class, and another, and another. She asked me if I would lead an extra class during the week.

How could I not? This group, this boot camp, showed me the importance of whole body fitness, not just running. This bootcamp gave me strength, support, camaraderie, in a world too many of us have come to know – cancer. We can talk, joke, support, make fun of each other, because we have all been down the same road whether it’s breast cancer or melanoma. It doesn’t matter. Cancer sucks no matter where it strikes.

Going back to Colleen’s request to lead boot camp – despite my years of running, I didn’t feel qualified to lead a fitness group. So I fixed the situation and became an ACE certified group fitness instructor.

Which in turn lead me to the Mukwonago YMCA.

Through an odd chain of events, I applied to the YMCA, got hired, went through several training sessions (even in the midst of diverticulitis – not a good idea, but maybe for another post), and subbed for my first class tonight.

I admit I was nervous. Don’t ask me why. Probably because I was subbing for a class that required rhythm and grace (cardio barre – what was I thinking? – a runner, a farmer, a writer/photographer?), which I usually lack. But I know strength and endurance and fun and admitted to my shortcomings and did the best I could.

What I loved the most was the people – connecting with the people.

In boot camp, it’s easy because I am one of them. I share my cancer story. I share my hope. I serve as a role model. In turn, I hope I can help them achieve the benefits I’ve discovered by being fit (extra fit) after a cancer diagnosis. I hope I can help them realize strength they never knew. I hope I can help them live life fully because they are fit and active and vital.

That’s something everyone can aspire to. Even members of the YMCA who come to a class because they haven’t exercised in forever and there is this wedding coming up and exercising on their own just isn’t working.  Or they take a cardio barre class despite admitting to having little coordination (high-five, I’m there with you and I am leading the class).

So my metastatic melanoma diagnosis lead me to become a group fitness instructor at the YMCA. Isn’t that a crazy path to follow? That’s how I’ve introduced myself in group exercise instructor training sessions. It makes heads turn and grabs attention. It’s the truth.

I wouldn’t be working (part-time) for the fine organization of the Mukwonago YMCA if it had not been for my melanoma diagnosis. Ok, so there was more to it than just that, however, melanoma lead me down paths I never thought I would travel.

I’ve stepped into the fitness industry through an unusual door. I have much to learn and am eager to do so. In turn, I hope I can share some of that with many others. Especially those of us with little rhythm or grace, but much heart. Especially those of us beating cancer.