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.

 

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.

 

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)

 

 

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.

What did you say?

Jokingly I will tell you I am half deaf, which isn’t far off, since only one ear can hear worth a darn. While I noticed hearing loss before my melanoma diagnosis, the loss increased dramatically during my treatment, which prompted a visit to an ear doctor to determine if Yervoy was contributing to the decline in my hearing.

Alas, all I can attribute it to is age and genetics (hearing loss runs in my father’s family). The good news, however, is that it is a conductive hearing loss.

Have you ever seen a doctor celebrate a diagnosis? You see, there is a surgical procedure, a stapedectomy, that can be done to restore some of the hearing if the diagnosis is conductive hearing loss. I qualify for that procedure…or a hearing aid. I want something more permanent.

Now that I am months out from completing my Yervoy treatment and showing no evidence of disease, I decided to follow this path and correct the hearing. If it gets rid of the unrelenting ringing in my ear, I will welcome that, but there are no guarantees in that department.

I went to see the surgeon who does this procedure, and during the course of the exam, he asked about my cancer – where is that at right now? I told him there is no evidence of disease and treatment was over, giving it no other thought at the time.

After leaving the office and turning over my decision in my head, I reflected on his question.

While I am certain he was asking about cancer to discern what additional risks might come with the procedure, part of me wondered if it was questioning the choice of a cancer patient choosing a corrective surgery. I mean, at what point is it unwise to stick more money into an old car with high mileage? It caused me to doubt my decision – at least for a day.

Then I shook off that fog.

To not correct my hearing when I have the opportunity, and at 56 go the route of a hearing aid, or worse yet, continue to ask everyone to repeat things and miss many parts of conversations, was to me, admitting defeat. It was saying, melanoma is going to kill me sooner or later, so why bother? It was giving up and living less of a life than I could. It was not taking a chance because I was afraid of the future.

I’m still scared out of my wits about the future, of melanoma, but I don’t think about it. I don’t think any further ahead than I have to, because that interferes with living now.

I do think about living each moment as fully as possible. I think about it often and wonder what tidbits I have missed when I saw lips moving and could make out no words. If I am not going to let melanoma stop me, why the heck would I allow a conductive (fixable) hearing loss lessen the quality of my life?

Not going to happen. Surgery is scheduled for next month. Yep, sticking money into that old, high-mileage car is worth it to me.

Survivor guilt

It happened sooner than I expected, and it hit me like a tidal wave. When attending the funeral visitation for my sister-in-law’s husband’s sister, I wasn’t certain of her cause of death – until I saw the scarf on her head.

She was 64. She had children, grandchildren. She had been diagnosed with leukemia less than a year ago. A bone marrow transplant put the leukemia in remission, but then it came back with a vengeance. She was diagnosed about the time I was finishing the first phase of my treatment. I celebrated one year as a survivor. She did not.

As I stood looking at her, the question, “Why have I survived and she did not,” rolled through my mind. That could be me. Stage 3B metastatic melanoma – that could be me. Why have I been spared with clean scans, more than a year past my diagnosis, and her family mourns?

I fought back tears as I hugged my sister-in-law and her husband. I hung on each word as they explained his sister’s battle with leukemia. I walked out of the church and bit my lip. I barely knew this lady, yet we were kindred spirits through cancer. Family birthdays and anniversaries were the only time I had seen her. Buried deep in my own battle last summer, I had missed the news of her diagnosis. And yet I survive.

I’ve read a little about survivor’s guilt. That doesn’t make it any easier to deal with the emotions of seeing a cancer victim lifeless in a casket, while you stand with no evidence of disease.

As luck would have it, we were visiting my family that day. My walls crumbled briefly when I saw my sisters. A couple of big hugs and a few tears and I was through my first wave of survivor guilt.

Until there is a cure for cancer, I know it won’t be the last wave of guilt that will wash over me. While I am proud of the fight I’ve put up this past year, I still can’t help wonder every day I survive, “Why me and not them?”

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?