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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For the record, or not

About a month ago I ran a 5K PR (personal record), beating a time from 2012 – before melanoma. Ever since my melanoma diagnosis in April 2013 I had been trying to get back to pre-cancer form and I did it – for about a day.

Despite any common sense, I followed that race with a long run the next day since I was preparing for a half-marathon in a month and it was the only day in my schedule for a long run. Bad idea. So bad I paid for it for the next month, putting in question if I could even run 13.1 miles.

I bounced back and forth between strengthening and stretching, ice and heat, trying to find the combination that would quiet the pain in my right leg, knee and calf.

A week before the race, I tried to run 11 miles. It didn’t go well, I blamed it on the dog and I spent the rest of the week wondering if I should downgrade to a 5K on race day. However, I don’t give in easily, not to myself, not to pain, not to physical limitations. Maybe to my grandkids, but that’s another story.

Here’s where the grace of God comes into play.

In my online feed, a video popped up from The Run Experience on Achilles running injuries. That video was the difference between me running 13.1 miles or not. I rolled out my calf and shin (intense stuff) like the video showed and noticed a remarkable difference. Enough difference to allow me to confidently go for 13.1 and not downgrade on race day.

I credit the rhythm of “Stayin’ Alive” for keeping me loose to the end, placing me third in my age group (surprise! but there were only seven of us) and most importantly, running my third fastest half-marathon time.

Granted, everything flared up again the week after the half, but I have purposely been easing my way back to running, trying to let my body heal so it’s ready for the next half in another month.

I measure my battle against melanoma through physical successes, always aiming for pre-melanoma times, back when I ran with little thought of the precious gift of movement and health. I never take into consideration aging unless it bumps me into a slower age group. I am always measuring myself against the me I remember before melanoma pulled on the reins and yanked the bit out of my mouth.

The thing is, I am now stronger and more fit in many ways than I was before melanoma, however, it’s the time on the clock at the end of the race that matters most, because that means I’ve truly won. I’ve won against time, age, treatments, neuropathy, bulging discs, spinal stenosis, and mostly, melanoma.

I still don’t run the way I wish I could, but I am getting faster. And I’m still running.

My first return to distance racing, I ran a half marathon with my daughter, Stephanie. It was her first half and I beat her by a good chunk of time. She kept running and getting faster with each race. The last race we ran together before my diagnosis, she beat me and it was the fastest pace I’d run in years. A month later I heard the words metastatic melanoma.

She logged her tenth half marathon this month. She keeps getting better with every race and is training for a full marathon this year. We finish in the top of our prospective age groups, with hers being much faster and bigger than mine. But ever since that first race together, as she improved and surpassed me, she’s always told me that she picked up the baton and litterally ran with it when I couldn’t any more.

It’s ironic. My passion has become her fire, has melded us together and provided countless memorable moments to cherish.

Should I measure myself by the time on the clock as I cross the finish line or by each step that has provided memories and fitness to keep me active and vital for my family? Either way, I’m not going to stop running or trying.

 

 

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.

 

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.

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.

Miles fighting melanoma

My oncologist only laughed and shook his head when I told him I planned to run a half-marathon three months after my last Yervoy treatment. I’m not even sure he considered my lack of preparedness for this race, his response was so quick. He laughed and shared stories of his wife’s determination, as a new runner, to run despite injury. He knew better than to argue with me.

I knew better than to go into this race with the intent to break a personal record. My only intent was to finish. Inflammation and neuropathy had caused me to stop running over the summer. I was happy I could walk and tried to convince myself that this too shall pass, but many times I wondered if it would.

Following prodding from the research nurse, I went to physical therapy, which produced almost instant results. Granted, I was still a long way off from 13.1 miles, but the pain was lessening. Slowly I began to add jogging into my morning walks, until I was jogging more than walking.

By the time I was released from physical therapy a couple of weeks before the half-marathon, I could run most of up to four miles, with only occasional periods of walking. To triple that distance in a couple of weeks is not the best advice for runners.

I had never gone into a race feeling this ill-prepared, but I constantly reminded myself, that I could walk as much as needed to finish. However, when out on the course, it’s not that simple.

Starting slow, I watched as many runners passed me, where on my better days, I would have been doing more passing until I settled into a pace. I consciously had to tell myself to listen to my body, to not push too hard and too fast. Going through the first four miles was like any of my daily workouts, but by miles five and six, burning started in my left foot, a sure sign that things were out of alignment.

I walked. I stretched. I walked. I watched still more runners move ahead of me. Doubt began to form in my mind. I knew I could walk the rest of the distance, but walking felt like it was taking forever!

Coming to terms with my limitations, I had no one to race against other than myself. I had to listening carefully to what my body was saying, since my brain was screaming a completely different message. Watching the miles tick off after the halfway point, I moved as fast as my body would allow, knowing if I pushed beyond that limit, I would undo weeks of physical therapy.

With one mile left, I didn’t want to walk any of that last mile. My daughter, who had finished ahead of me, came back to meet me, cheering me on for that last stretch.

I finished strong, which is what all runners hope for. As I crossed the finish line, I glanced at the clock, surprised that I finished faster than I expected.

There was no record-breaking pace. My time was 21 minutes slower than last year’s race – in the midst of treatment, but at the beginning of the onset of neuropathy and inflammation – and 26 minutes slower than my fastest time from two years ago.

Two years ago when my daughter and I ran our first half-marathon together, I blazed ahead of her. This year, she took the lead, bettering my fastest time by a minute. We both looked at our times this year and immediately set our goals for the next race.

I could have easily sat out this race, but that would be letting melanoma get the better of me.

Running gave me identity as a teenager. It gave me endurance through life. It gave me a bond with my children, something we could do together now as adults, each at our own pace, but together. There was no way I was letting anything get in the way of that bond.

Funny enough, my recovery from this half-marathon was the best I’ve ever had – because I listened to my body all along. The strengthening from physical therapy has made me a better runner.

Cancer is strange like that. It’s one of the worst things that can happen to you, yet it can give you benefits you would never have reaped without going through the battle.

With luck and training, perhaps I will smash my personal record next year. Regardless of finishing time though, every race I get to run with my family, is a blessing and a treasure. A faster pace is simply icing on the cake.

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?