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.

 

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.

 

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.

Looking back

It’s been two months since my last post. I didn’t post about the burning, searing, pain in my leg that made me feel like I could collapse at any minute. I didn’t post about the hearing test that showed success from my February ear surgery. Those are yet to come I guess.

Today I look back at a whirlwind weekend, one which a year ago would have sent me to bed for a few hours. Yet, I feel well. Tired, but well. Today I look back at the memories of my son’s wedding a year ago, just a few months out from my last treatment of ipilimumab.

I remember how much I hurt by the time we got to the reception, how tired I was and how desperately I wanted to lie down on a soft bed. I almost left at one point to go back to the hotel, but stayed when I realized my family still needed me, my son still needed me, mostly, at that moment, I felt my daughter-in-law needed me there. I stayed and shot an extremely out-of-focus, badly lighted video of the last stragglers, drunkenly singing one final song. The quality stunk. The memory, however, is priceless.

As I watched that video again, a year later, I realized what I would have missed, if I had conceded to my discomfort. I would have missed a moment that will never happen again.

Cancer does that. Takes those moments and sears them into your heart, telling you – don’t take this for granted. Yet, the further out you get from diagnosis, the more you push this aside, thinking, I’m cancer free, feeling good, moments like this will come again, they will wait. Yet, they don’t.

It’s been two and a half years since my metastatic melanoma diagnosis. One year, two months since the end of treatment. My energy is coming back. In a way that scares me, thinking I won’t take the rest I need to ward off any recurrence. Thinking I’m invincible, I’ve got melanoma beat.

Yet, burning leg pain sent thoughts of metastasize through my head, requiring an MRI to prove the cancer had not spread. Physical therapy was the best solution. Thankfully it is working very well.

I’m tired after our whirlwind weekend, yet would not trade a moment of it for the memories it brought – seeing my youngest son after too long, my parents and my three grandchildren, my daughter enjoying her god-daughter, my son and his wife celebrating one year of marriage, pushing through yet one more project in the updating of our house.

Looking back a year, I realize how far I’ve come. Looking ahead, I realize how much more lies waiting.

Rest might be a good option tonight, for my family needs me tomorrow, next week, next month, next year, for as long as I can go. There are moments that won’t wait. I want to be there to embrace and capture each one.

Circle of life

The Lion King has always been one of my favorite movies. It points out many life lessons. However, I never anticipated living out that circle of life in one emotional week.

In one week’s time, my first granddaughter (third grandchild) was born, my 100-year-old grandmother passed away, I celebrated one year since my last treatment for melanoma, and the week topped off with my father-in-law requiring surgery and ending up in ICU with a tube in his throat to help him breath. The grandeur and miracle of birth, followed less than three days later by the passing of a century of life, sprinkled with a reminder of the life-threatening instances which make life priceless and precious.

While my granddaughter is named after my mother-in-law who died seven years ago, how can it be that my grandmother, whose health has been failing for years, peacefully passes days after her fourth great, great-grandchild is born?

A century of our family slips away as a new generation begins. The circle of life. My granddaughter will never know her namesake, nor the matriarch who formed our family’s maternal branch, but both will be with her in every tradition we share, every token passed down, every memory retold, until she finds her place on the path unwinding.

As the song by Elton John tells us, the circle of life “moves us all, through despair and hope, through faith and love.”

My granddaughter, and two older grandsons, provide the hope through the despair of death and illness. I found out grandson number two was on the way shortly after my diagnosis in 2013. As I toasted a year since my last treatment this week, it seems long ago that I finished the last round of immunotherapy, yet, in cancer terms, a year out from treatment, two years out from diagnosis, is not that long, thus the continued need for hope and faith.

My father-in-law’s hospitalization reminded me of that as I watched him unable to speak to the room of people gathered at the foot of his bed. They talked about baseball and pouring concrete, yet he drifted in and out of sleep, only able to glance about the room and nod if a yes or no question was thrown at him. I wondered how I would feel if that were me in the bed. And, quite honestly, I wasn’t so sure such a crowd would be soothing, despite best intentions.

The whole week sent us on an emotional roller coaster with exhilarating ascents, plummeting descents and slow, painful, creeping climbs, which we are still climbing, as the fate of my father-in-law waits for doctors in the next few days.

Weeks like this are the rude reminders of the fragility of life, “on the path unwinding, the circle of life.” A reminder that there is more to see, more to do, more to take in, more to find than can ever be seen, done, taken in or found, but the sun rises high… and it sets, every day of every challenging week of every tiresome month, of every year, on the path unwinding.

We have little control on that path unwinding. We simply follow it with the rising and setting of the sun, marveling at each sunrise and sunset, just as one generation rises and another sets in the circle of life.

Blogging through Mount Melanoma

Today I talked to high school kids about blogging, about the personal experience of cancer. What do I know about blogging? I’m a journalist. I blog because I have cancer. I blog for survival, for awareness. Up until now, I didn’t think I had much to share or say to anyone who I couldn’t speak to face to face.

But cancer changes that. It creates an awareness, an urgency you’ve never felt before, like you have to get it all out before it’s too late. It creates a writer’s flow I hope none have the privilege of experiencing because once you are in this club, there is no canceling your membership, there is no backing out.

How do you explain all that to 16 and 17-year-old kids who, hopefully, haven’t been dealt the horror of, the words, “it’s spreading”? How do you explain the passion that follows NED (No Evidence of Disease)? How do you explain the depth of love you feel when you were at risk of losing it all? How do you explain the intense fear, the desperate anxiety that comes with a cancer diagnosis?

I compared it to mountains and valleys. Little did I know that up until now I had been living blissfully in the flat, beautiful plains of life where gentle breezes brush smiles on your face and you gaze into the never-ending horizon thinking storms will never reach your porch.

Cancer plunges you to the depths of Death Valley, then, if you are lucky, bungee cords you up to the peak of Kilimanjaro where you witness all the glory of nature in its richest colors with clarity the best Nikon lens can’t match. Until the cord drops you back down, almost allowing you to hit bottom again before springing back up. It’s the fastest mountain hike you will ever experience. And the most exhausting.

If it weren’t for my melanoma diagnosis, I doubt I would be blogging. There are so many bad blogs out there, why add one more? I’m not in it for glitz or glamour, thus the sparse, dark layout of the blog with no added photos to compete with the message. I might get to that point. Afterall, I am a photographer too.

Melanoma is a dark, ugly beast. There is no glamour.

However, there is hope. Hope that by talking, by blogging, more will know, more will understand, more will take action to prevent the deadliest of skin cancers, to prevent all skin cancers.

What do I know about blogging? Not much. I do know I wish I could share this message face to face, but if I can’t, blogging is the next best thing.