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)

 

 

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.

Revelation

The week after having a revelation in church that perhaps the two small spots on my lung are part of the plan for delivering the message I am meant to share, three people approached me, within a couple of days, asking advice and thanking me for sharing my melanoma story.

One lady, diagnosed with melanoma, came to our office asking what I have done to help protect myself from spread of the black beast, after reading my column revealing the latest in my melanoma journey. While I could only share with her, what I feel helped me and the resources I have accumulated and followed in the almost two years since my diagnosis, talking with her, letting her know I understand seemed to be the most important thing for me to do on that busy Monday.

Then within a day or two, I received an email from a teacher whose class I had talked to and told about my journey. Because of hearing what I said, she scheduled a skin examine months before she would have otherwise. That examine came back indicating she had pre-melanoma spots, which could quickly turn to melanoma, if not taken care of right away.

“Thank you, thank, you, thank you! I have two small boys at home and I need to be around for a very long time,” she wrote. “I truly owe ya one.”

That same day, in reply to a Facebook post about the lady who stopped in the office, a friend shared the result of her whole body skin check – basal cell carcinoma. She also thanked me for what I have shared.

I’ve shared my story with whoever will listen in the hopes of people seeing the importance of sun protection and checking their skin on a regular basis. Never had I imagined this sort of impact. As a writer and avid reader, I know the best stories involve conflict and struggle and overcoming odds. Sometimes the most meaningful stories are the hardest to write.

None of us will ever ride into town on a donkey as palm branches are spread on the ground. None of us will suffer to save mankind, but each of us has a purpose, a story, a mission for life that we need to fulfill. I never expected mine to be this, but to consider this melanoma journey as burden to bear rather than a mission to humbly perform, weighs on the soul and deeply saddens the heart.

I’ve never considered my cancer journey a private course. To suffer without trying to help someone else, only adds to what the disease steals. Melanoma has taken much, but it cannot take away purpose and pride and strength, no matter how weak we may feel at times.

I won’t know the next chapter of my story for another month, and even then, it might not be clear, but I do know whatever the next chapter, the next page, it cannot diminish my message.

Caution – curves ahead

Once I was brave enough after my diagnosis to research melanoma a little, I knew from the start what I was up against. Afterall, melanoma isn’t called the Black Beast without reason. Yet, despite that knowledge, I somehow still fooled myself into thinking the road on this journey might be straight and smooth.

Cue the curve ahead sign, how sharp of a curve is still to be determined.

When I didn’t get a call about my last scans,nor any word on blood tests at the end of the day, which has been the norm for me, I became suspicious. When I sat in the exam room longer than normal waiting for the doctor, that suspicion increased. I tried to convince myself it was because my appointment was at the end of the day. This is one of those times when no news is not good news.

That yellow curve ahead sign came as two small nodular densities on my left lung, with the largest coming in at about 5mm. Melanoma patients, and any cancer patient knows, metastasis has to be considered, thus the need to redo scans again in seven weeks.

While the neck scan came back clear, that little punch from those two small spots caused a deeper intake of breath as I absorbed the news. News that was followed by an elevated thyroid blood test, which might point to an autoimmune issue, causing the thyroid to possibly “burn out.”

I would be lying if I said I walked out of the clinic that day skipping and dropping flower petals, although the weather called for such action. I walked out instead re-calculating the journey ahead, wondering if easing up on dietary restrictions, or not getting enough rest, or anything I might have done could have allowed an infiltration of the enemy.

As I finally begin to sense recovery from ear surgery (stapedectomy – that’s for another post), it’s hard to discern what ill feeling came from the surgery without wondering if some of it could be connected to the newfound intruders.

Granted, this has caused me to pull to the side of the road a bit as I wrap my head around the latest news, yet, what choice is there other than slap on shades, roll down the window and continue cruising down the highway?

The curve might be sharp or gentle or result in a minor detour. Whoever said the ride would be smooth?