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)

 

 

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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.

Lessons of a grand marshal

When a member of our local Lions Club asked me to be grand marshal of the Father’s Day parade, I was a bit stunned, yet honored to fulfil that request. Wherever this melanoma journey takes me, through a parade or wherever, why not make the best of the ride? And I did.

First lesson learned, $40 of candy doesn’t go far in a fairly popular parade. And to the American Legion rifle squad member who I narrowly missed lofting the last piece of candy to someone at the end of the parade route, I’m glad it didn’t hit you. The wind made accurate tosses a challenge.

While driving along the route, tossing candy was fun (and let’s be honest, most people along the route are only waiting to catch your attention so they can get candy), there were several standout moments during the afternoon.

The first – coming to the spot of the parade where my family sat, my parents waving and beaming. My sister drove them an hour for that brief moment when I drove past on that car. Thankfully the access to their spots on the route allowed this to happen, but seeing them smiling, meant more than I can describe.

Secondly, the number of people taking sun safety precautions, wearing hats, finding shade, using sunscreen. It had more to do with the heat than anything, but it’s something skin cancer patients like to see.

Finally, the lady who stopped me as I walked back along the parade route to thank me for everything I have written in the column ofour local paper. You are the reason I continue to do this, to share my story, to try to make a difference.

As a breast cancer survivor she’s read every word and taken it to heart she told me. I don’t kmow that I said anything more than any other cancer patient might have, but knowing we are not alone in this war makes a gigantic difference.

These are the moments you hold onto, savoring every nuance.

Next year there will be a new grand marshal for the parade and all this will be a dim memory to most.

However, I’ve shared this moment with my family. I saw people paying attention to something and using precautions – at least some of the time when they are in the sun.

Mostly, next year that breast cancer survivor and I will still be fighting and I hope she stops me again on the street as I walk past taking photos of the parade. I want to hug her again and wish her luck, because every year is a priceless treasure, once you bear the diagnosis of cancer.

Lions cub members, thank you for this opportunity. I will treasure it always.

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.

Prayers answered

Be careful what you wish for. I kept that in mind each time I talked with God the past seven weeks after I learned of two small spots found on my left lung on March 13.

I knew better than to ask to be relieved of the burden of melanoma. I wasn’t brave enough, my faith not deep enough, to say, “Your will be done,” because what if God’s will disagreed with mine? I still had lots I wanted to do here, but so does any cancer patient.

Instead, I asked for strength, to get me through whatever lies ahead. I asked for peace to live with whatever the results of the next scan would show. I asked for wisdom to see the reason behind it all. I asked to be filled with grace until I finally got the next results.

I only thought the past seven weeks of waiting was tough. Then I had the chest CT the other day and knew I had to wait again, knowing the results were floating around somewhere, my fate plastered on a screen.

Yet, the day after the scan, when the clinic number came up on my phone, an instant of fear seized me. The answer I wanted, or didn’t want to know, hung on the other end.

“Your scans look good. The spots have resolved.”

A tremendous weight lifted from me. I think every muscle in my body relaxed with those words. I walked back into the office with both fists pumped into the air.

The past two months have been hard. After my stapedectomy (ear surgery), there were times I felt as bad as I did going through melanoma treatment. It felt like I brought the curse of melanoma crushing back down on me.

So when my oncologist said the scan showed two small spots on my lung, I wasn’t completely surprised. I knew things weren’t right, but couldn’t point to the cause – surgery or melanoma.

There were many times I cursed myself, doubted myself in those days, for thinking ear surgery was a good idea, to think I was so far ahead of melanoma that I dare invest in my future. I was after all, only two years out from diagnosis, which in cancer terms is nothing. What was I thinking?

Yet, I plodded on, for what else is there to do at that point but trudge through the mess? Slowly, I sensed improvement. When my hearing test came back with good results and I had finally neared the end of the road to stapedectomy recovery, tension eased.

But there was still the cloud hanging overhead from those two lousy spots.

At one point, when a spot near my original lymph node surgery swelled up under my arm, I lost it, broke down crying, got angry, and cursed every malignant cell around, telling them they would not win. Thankfully that was nothing more than a flared up muscle pull – not lymphodemia or anything worse.

It’s been a long road from “there are two spots on your left lung,” to “the spots have resolved.” Much of that road was a mental battle I feared I was losing. I feared in losing my mental grip, I would give melanoma the slight edge it wanted to get back in. It scared me to no end.

Was it my little shouting match with melanoma? Was it the cross I carried with me every day since learning of those spots? Was it my talks with God or the prayers of others? I will never know, but I do know the prayer I never had the courage to pray was answered. Please don’t let it be melanoma.