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.

 

Nervous opportunity

Tomorrow I will spend more than half the day talking to seventh graders about skin cancer, melanoma and sun protection. I’m a bit nervous.

I’ve spoken in front of many crowds, enough to not be swallowed in fear like I was with my first forensics speech in high school where I nearly passed out. No, I’m a bit nervous for a different reason.

For two years, I’ve wanted this opportunity, to talk to youth, make them aware, tell them what I wish I had heard when I was younger. Not that I would have listened. That’s what makes me nervous.

I want to get it right. I want to reach them so they want to listen, so they walk away with at least one piece of knowledge that perhaps they will share with one or two other people, multiplying the impact.

I’m nervous because middle school is a fickle time when hormones are stronger than reason, and who wants to listen to an old lady nag on about something that will never touch invincible youth. Except it will. Except it has.

In a way, I’m lucky. I got melanoma when I was “old” in the eyes of a seventh grader. Not so old from the eyes of a 57-year-old with grand babies needing loving and hugs and long talks over popcorn and a movie.

I’m lucky because remarkable strides are being made in melanoma research, giving me a better chance of beating the odds. I’m lucky, because I have lived the 30 some years that some younger melanoma patients will never experience. I’m lucky because I’m strong, because I’m fit.

I’m lucky because I get this chance to maybe make a difference. That’s what makes me nervous.

I’ve researched. I’ve been researching since I was diagnosed. Now it’s just a matter of putting it in order, getting the facts out there that will make seventh graders take notice.

I’m a bit nervous. It might take me til the last hour to get it the way I really want it, but even in that imperfection, I hope speaking from my heart touches theirs.

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?

Ode to sun protection

With May (Melanoma Awareness Month) upon us, and thoughts of summer finding its way north (will it, ever?), I’m looking at my first true season of fun in the sun. Since I spent most of last summer, in recovery mode, this is the first season since my diagnosis when I will be truly confronted with shielding myself from UV rays.

Admittedly, I have a horrible history when it comes to using sun protection. Naively thinking my easy-to-tan skin was less susceptible to damaging rays, and not liking the sticky feeling and funky, fruity smell of sunscreen, I rarely gave the risks of sun exposure a thought, despite my love for the outdoors. The thought of a cover-up shirt on a hot, humid day was even less appealing. It’s easy to see where all that got me. An odd tan line from my camera backpack is much easier to resolve than skin cancer.

Up to the time of my diagnosis, I still fell under the misguided social notion that a tan exuded an appearance of health. Now when I see people with deep, dark tans I shudder, cringe, and divert my gaze not wanting to view the damage that can’t be undone.

So to you sun protection, I humbly bow.

I should have know when, I should have known how.

To slather, slop and smear, is by far a better route

To shield, shade and shy from the rays’ harsh shouts.

There is something stylish about a wide brimmed hat,

And broad, dark sunglasses under that,

For skin cancer knows no age, no bounds

Slather that lotion to tame it down.

Don’t like feeling like a greased pig? 

Grab a shirt, make it loose and big.

Pale is chic around the black beast

Melanoma find somewhere else to feast. 

As the Sunscreen Song, says, “If I could offer only one tip for the future, sunscreen would be it. The long-term benefits of sunscreen have been proved by scientists…trust me on the sunscreen.”