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.

 

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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.

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.

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.

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.

Rest

Growing up on a farm, there was never much time for rest. We worked hard, getting more done in 12 hours than most people did in 24. We were proud of that strong work ethic. Laziness had no place in our life, nor did it gain any respect.

Melanoma (Yervoy) treatment has no respect for strong work ethics, or busy schedules. Since I started the clinical trial, my body demands rest or it stops functioning at peak capacity, grinding me down to a dim-witted simpleton with a vise-like headache. Granted, that can hold true for anyone, (maybe not the dim-witted part) but my normal level of endurance and energy is markedly lower than before treatment and diagnosis.

It’s a fact I have to live with, embrace and adjust for in my schedule. It’s hard.

For one, as a journalist, long days (10 to 12 hours) are unavoidable at times. With spring elections recently completed, election-night coverage severely minimized my effectiveness the next day, sending me home much early than normal with a headache that felt like the Hulk squeezing a melon – mine.

Aside from job requirements, in my head I’m still trying to clarify the difference between needing to rest and laziness. A day or two of solid activity with little down time usually results in a couple of extra hours of sleep and several more of rest to begin feeling normal again. I try to ignore it, yet pushing beyond my limits results in the Hulk threatening my brain matter again and me wandering around trying to focus – on anything. Pushing more makes joints and muscles join in the revolt.

As my treatments spread out to every 12 weeks during the maintenance phase of the clinical trial, the side-effects became less severe, but by no means does it take a vacation from the havoc it causes to my body. In my head, I keep thinking I can go back to my normal lifestyle, but my body continually pulls me back to the reality of the treatment and the disease.

Resting is not being lazy. I say that more to remind myself than to make a statement. My youngest son told me it’s about time I learned to rest and sit still once in a while. I know. It still isn’t easy.

Even with the knowledge of the deadliness of this disease, I keep thinking the treatment will buy me time, I won’t have to slow down as much – not yet – because I’m usually feeling fairly healthy and strong. There is no evidence of disease at this point, which is a blessing beyond compare, but will it take another spot to show up before I slam on the brakes completely? I fear it might. That’s why I try to give myself permission to rest, to take naps, to listen intently to my body.

In all reality, a day or two of hard work usually equals one day of rest it seems. The improvement I feel after that rest should be proof enough of its value, yet in the middle of life and all its demands, it’s a challenge to concede to the limits disease and treatment bring.

There is the saying, “You can sleep when you’re dead,” but if sleep and rest are attempts at extending and enriching life, why do we brush it aside so easily? Rest is not being lazy, it’s being smart.

The time has come, the time is now

There is a certain amount of freedom that comes with cancer. Sounds odd, but in truth it can be liberating. For the first time in my life, I easily and without guilt can say no.

You see, I’ve spent my adult life doing for others. I thought it was my calling, to give of myself until there was almost nothing left to give. If there was a favor, or a job, or a task asked of me, if I was breathing, I would commit to doing said deed – to the point of surviving on little or no sleep at times. My husband always hated how I would cram 15 pounds of activity in a five-pound bag. I would juggle and stress and stretch myself because I felt, if the good Lord put the task in front of me, who am I to deny my time and talent? I didn’t have a lot of money to give, but by gosh, I was going to give of my time until I couldn’t any more.

That time has come.

In the six to eight months before my diagnosis, I noticed how much harder it was to balance work, volunteering, family…all the balls I had so effortlessly kept floating in the air for the past decades of my life. Granted, that was an extremely stressful time in my life, between being short-handed at work and other changes in my job, and the normal strain of a robotics season (one of my passions that I have been involved with for 10 years), there were times I felt at a breaking point. But I plugged on and made it (whatever “it” was at the moment) happen, because that is the difference between success and failure.

There was one time in particular, during training in a new software system for work, I received text messages of a robotics situation that required immediate attention. My choices were to ignore it and have the kids on the team (about 20) miss the opportunity to experience the national championship – what they had worked extremely hard at for several months – or make it happen. I don’t let people down. Somehow I got through training and juggled numerous steps needed for the team to travel to St. Louis, the ultimate dream of every robotics team.

However, I never went with them. The week before we were set to leave, I received my diagnosis of metastatic melanoma. While they would be (hopefully) having the time of their lives, I would be going through tests to determine the extent of metastasis. It was a bittersweet time. For once, they fully realized the extent of everything I do for such an event. I followed them as best I could online, but I missed the thrill of the championship and the culmination of the high school careers for some kids I had worked with for the past four years. They texted me telling me to watch one particular match. As the announcer introduced the team for the match, he also said they dedicated the match to me because I couldn’t be there for health reasons. On the robot they placed a ribbon that said, “Carol Strong.”

But it’s funny how life works, or how God guides us, depending on your beliefs. My role as a 4-H leader, which I held for a number of years, was easily relinquished when our club leader retired this summer. I could feel burdens falling from my shoulders. That’s where the freedom of cancer stepped in. From the writing group I have run for about 12 years, to being part of a local committee for FIRST LEGO League (FLL), I knew I had to say no. I know I have to simplify my life to the bare essentials – my health, family, friends and work (since retirement is not an option right now).

While there is no evidence of disease (NED) at this time, I am not going to squander the energy I need to stay healthy and ward off a recurrence of melanoma. I have never done anything I didn’t firmly believe in, but right now I firmly believe in surviving and watching my grandchildren grow. I am confident in time I will find new direction, because I was given this cross to bear for a reason – one I am still figuring out. Now though, for the first time in a long time, my focus has turned to me…for the sake of my family.

A close friend of mine joked that she didn’t know who she was talking to when I told her this. If I hadn’t quit a specific activity, she was going to use her authority to tell me I couldn’t do it. I’m okay with saying no though. The time has come, the time is now, to go, go, go. I don’t care how – but I am going for survival. I have people who depend on me, and I will not let them down.