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.

 

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.

Boot camp

I never thought I would like, let alone own camo clothing, That is until boot camp. Up until then, I wouldn’t have owned anything camo had it not been for my oldest son’s wedding when all the girls wore camo tanks to get their hair done.

After one of the leaders for Beat Cancer Boot Camp – Wisconsin hurt his knee, I started leading sessions in his abscence…and bought camo paratrooper pants (very comfortable I admit) in the process.

I stumbled across BCBC while going through physical therapy after surgery to remove lymph nodes for metastatic melanoma in 2013. My therapist, Colleen, was (is) amazing, and she brought BCBC to Wisconsin a few years ago. It was the flier in the ProHealth physical therapy office that caught my attention.

Years before I was diagnosed, I had been covering an event (I’m a photographic journalist) where I saw something about a cancer boot camp. I remember thinking, “Boot camp would be so cool,” but I didn’t ‘qualify’ as I had no cancer. Be careful what you wish for.

As a runner, I joined BCBC to stay strong and become stronger, since melanoma and Yervoy were knocking me down a few pegs on the fitness ladder. What I found was a support network, a community that empowers cancer patients to become strong, that supports each other, that allows us to talk freely about our journeys (if we want and usually during coffee after Saturday morning sessions) because everyone there understands what the other is going through.

The beauty of BCBC is that every exercise is offered at different levels, depending on where each person is at in their cancer journey, yet the regime is based on Navy SEAL training. While most of the participants are cancer patients, along with a few cancer therapists; BCBC is open to family and friends of cancer patients.

When I started BCBC, I was going through Yervoy treatment in a clinical trial. While the side effects with Yervoy are not as severe as some other treatments, inflammation is right at the top as one of the biggest challenges I faced, magnifying muscle pain to an intense burning sensation.

During that time, I could barely jump or run without pain or much discomfort, yet I refused to sit idly by and wait for treatment to end. Incorporating some of the boot camp exercises into my daily workouts, I became stronger and probably more overall fit than I had been before my melanoma diagnosis.

As the BCBC slogan says, it’s “for strength, for health, for life.” I am no longer exercising to complete a certain distance during each run. I am exercising to add miles to my life. I am exercising to gain overall fitness, not just running fitness. I am exercising for a strong heart and a stronger head, knowing every ounce of muscle gained, is that much more for fighting cancer.

Moving away from my last treatment in July 2014, inflammation continues to decrease, allowing me to participate more fully in each session. When asked to lead some sessions, I’ve gained a new perspective standing in front of the group.

I see the different levels. I see the different struggles. I want participants to know it wasn’t that long ago, I struggled too. I hurt, sometimes even cried in pain. I pushed on. I want each participant to see that they have the potential to do the same. I want each person to know that the best version of themselves is one push up, one plank, one crunch away and you can build on that each day, each week.

BCBC troops are brave, bold and will do more than survive. With boot camp, we will thrive. And proudly wear camo.

A simple act of stillness

Sit still. How many times have we heard that, have we said that? How many times do we actually do that? In the wake of dealing with side effects from Yervoy treatment (bi-lateral inflammation), and despite the benefits and drawbacks of steroids to counteract the inflammation, stillness is the one remedy that has proven to be most effective – with the least side effects. One wouldn’t think it would be so hard to sit still.

The simple act itself, sitting without motion (or in my case laying without motion), isn’t as difficult as justifying sitting with no productivity, when a million tasks beckon to be completed. It’s a nasty social web we weave, when our whole being seems to circle around accomplishing as much as possible, in as little time as necessary. Yet, when one more treatment, possibly life-saving treatment, swings in the balance, it tilts the scale more in favor of sitting, despite inner voices that shout otherwise.

When you’ve spent a good portion of your life going full-throttle, it’s a challenge to ease off the gas, let alone slam your chassis into park. Every vehicle needs to run a certain amount so it continues to function efficiently and effectively. I’m trying to calculate that amount on a daily basis.

One day of the proper amount of stillness revs my engines, thinking of all I can accomplish now that I’m feeling better. Until I stomp on the gas and realize that wasn’t such a great idea.

Then I sit, and the blessed feeling of relief sweeping over me at that moment, forces me to try and come to terms with many things. How can stillness continue to make you feel useful? How can stillness help you reach fulfillment? How can stillness fuel your passion? How can stillness make you feel alive?

The answer lies in the rejuvenating power, no matter how brief, that accompanies that simple act of stillness. I’m hopeful that sitting still will produce more long-term benefits as I work past the aggravation of bi-lateral inflammation, secure that last dose of Yervoy, and head down the road to no recurrence of melanoma. Until then, I’m trying hard to stay still.

Girl on fire

As I sit here writing this, I hope the pain in my leg holds off long enough to actually allow me to complete the post. But the Prednisone (it’s kind of funny that spell check gives a correction of prisoner for that word – just a little irony there) seems to have begun kicking in and I am finding relief for the first time in several weeks.

Let me back up a few weeks to our vacation in Florida – a wonderful family time spent on the beach (with plenty of sunscreen, hats and shade). During that time, which was two weeks after my last Yervoy treatment, I began experiencing leg pain, but attributed it to running on the beach (you can’t expect a runner to not run on the beach), walking in the sand, walking while shopping, and extended sitting for the brutal 15 to 16-hour car ride there and then again on the way home.

It continued to get worse, concentrating on the outside of my left knee, then spread up to my hip, into my back. Eventually my left arm, shoulder and across my upper back on the left side were also engaged in the burning pain. I am not one for swallowing pills the minute I hurt. I gritted my teeth and figured sooner or later it would get better. There were days my whole left side, from my shoulder to just below my knee, felt like it was on fire. I couldn’t sit, I couldn’t stand without pain. The only relief was laying flat on my back, and even that had limited success.

My breaking point came in the middle of the third week. I barely got through work that afternoon, but wanted to go to Beat Cancer Boot Camp, even though I knew the workout would be a challenge given the way I was feeling. Boot Camp always makes me feel better.  I made it through, but I didn’t feel better. That night the pain brought me to tears.

Following the suggestion of a friend who has dealt with a lot of joint pain, I soaked in a mineral bath. It was the first hint of relief I had felt in three weeks. As I lay on the bed that night, I could feel the pain begin to settle back in and slammed Ibuprofen in hopes of keeping it at bay. It barely touched it.

After explaining the situation to the nurse the next morning, they determined I needed to be seen by Amy, the nurse practitioner. The good news was, my blood tests came back normal. The bad news was, bi-lateral inflammation like I was experiencing was a distinct side effect of Yervoy and would need treatment with steroids. If the inflammation gets worse, I won’t be able to receive the final Yervoy treatment in the trial, according to the clinical trial guidelines.

One more treatment, less than two months away, and it’s dependent on un-frying my circuitry, with steroids that have their own side effects to toss into the mix. One person tells me my house will be “really, really clean” because I will have extra energy from the Prednisone. My mom hopes it doesn’t bother my stomach like it bothered hers. On the up side, Prednisone tends to increase blood sugar levels, so for 20 days I shouldn’t have a problem with the low blood sugar levels that have been challenging me during treatments. Time will tell for the rest.

It’s been six hours since I took the first dose. Other than a headache and overwhelming fatigue (guess I didn’t get to the excess energy part yet), there appears to be some relief from the burning pain. After all, I sat through this whole post without getting up once and my leg doesn’t feel like it is on fire. Funny thing is, through that burning searing feeling of pain, I never once felt like Katniss Everdeen, Girl on Fire. What’s up with that?