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.

 

All I want for Christmas

On this day three years ago, our adorable, youngest grandson was born. He was our Christmas angel that year, born right before a snowstorm stopped the world for a day.

I remember when we found out our daughter was pregnant with him. We stood in their kitchen as the news of our oldest grandson becoming a big brother sank in and the realization of our family growing took hold.

We received that news sometime after I was diagnosed with metastatic melanoma – between the diagnosis and knowing the exact extent of the disease. At that time, my mind was still hung on the word metastatic, spreading. I smiled at the joyful news, but inside a part of me cried, not knowing how much of this wonderful new life I would get to see.

Today I smile on the inside too, after another clear checkup and NED (no evidence of disease) in my blood tests and scans. Perhaps another gift from a Christmas angel. Although antibiotics have not begun their work on the probable sinus infection causing the headaches I’ve been experiencing, at least it’s treatable.

I graduate to appointments every six months now, which is amazing and somewhat scary. At three-month intervals, I usually had something pop up around the time of my next visit. Now if something pops up, how long do I wait? As my oncologist said, “We’re still here,” but still.

The clinical trial I am in stretches appointments out even further after the next six month visit, to one year, however, my oncologist said we aren’t ready for that quite yet, which is fine with me. This is like weaning a baby off a security object.

Three and a half years ago, we were dealt the worst news a family never wants to hear. Two and a half years ago, I finished treatment and even now, I sometimes think certain issues are lingering side effects – like the headaches – although I pray the antibiotics knock it down and it’s truly only sinus related.

With more than three and a half years behind us in the cancer journey, we are cautiously looking ahead to the five-year mark and how we will celebrate that milestone. However, as each day passes, I remind myself, nothing is guaranteed. I remind myself of that tentative feeling in the pit of my stomach the day I first heard about our youngest grandson.

I’ve been blessed to watch him thrive and grow, and watch another addition to our family do the same. I embrace every opportunity to be with each of our grandchildren, loving them as deeply as possible in those moments, much like any grandparent might, but I know, I can’t waste any hugs or kisses or books read or movies watched or silly times together. Any of us can be gone in a moment, but I’ve been given advance notice that I don’t want to ignore.

Three years ago I held a little bundle of boy in my arms, crying at the miracle of birth, at the tenderness of life. Today I tossed him into a pile of cushions as he gleefully scrambled up and shouted, “Do it again!”

He will never know the stress our family endured in those early months of his life. Stress that tinged the most joyous news, with bitterness, but which now we wipe away with every report of NED.

What better Christmas gift can one receive than that?

 

 

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.

Listening in quiet moments

I used to fear quiet nights, like they were statements pointing to a lack of value in my life. I knew at some point age would overtake body and quiet nights and a good movie might be the best I could hope for at that point.

I crammed as much into my life as possible, pushing physical boundaries to ridiculous limits, making myself think what I was doing was important, perhaps making up for lost time, perhaps, trying to prove self-worth. It’s not until you step away from all those distractions that you see the truth.

Tonight I sit with a glass of wine as I write this, relaxed and rested. For the past several years around this time I would have been buried, exhausted, and struggling to keep my head above water.

Those who know FIRST LEGO League (FLL) know what an amazing program it is for elementary and middle school kids. I lived it with my youngest son, from fifth through eighth grade. I watched him mentor FLL teams as a high school student, while I coached the high school robotics team. It’s a wonderful, experience for kids and adults who are involved with the program, which is run mostly by volunteers. Every year we would host regional and sometimes state tournaments, where I helped as judge advisor for several years – a very intense, sometimes stressful position. There is enough stress in daily life, without asking for more.

I do not regret one moment I had during my involvement with those activities for they were extremely rewarding and fulfilling in the way anything that helps another reach his or her potential can be.

I know now though, that the only true value in my life is being here for my family every minute that I can. For that, my decision last year to step away from the activities that stole so much of my time, energy, attention, and patience from my family, is the best choice I have ever made.

I apologize to my family, to my husband, for all the years they put up with the clutter and confusion and chaos I added to life because I thought something, somewhere was calling me – for what, I do not know. I’ve always believed God wants each of us to use our gifts as best we can. That is what I thought I was doing – although I prayed about it often.

As I told a friend tonight, my family is too important to risk spending energy on anything other than my health and survival. Melanoma is too beastly to think it will quietly slink away, with one surgery and a clinical trial. I am no fool. I read about the disease and the research and know the war that is raging within me, even though at this moment there is No Evidence of Disease. I am no fool.

I no longer fear quiet nights, for now it means recharging for a better tomorrow. It means I have enjoyed another day on earth. Tonight I sit and smile, knowing I have taken the best course for me at this time. I smile, perhaps because I know I did my best in previous years to benefit those around me, but now, my focus is my family, close friends, and little else.

Looking back, I wonder how I managed working, family and the many other things I thought were important. Who was the fool then?

I no longer fear quiet nights, for as a plaque on my wall says, “It’s important to make time for quiet moments, since God speaks in whispers and the world is loud.” God, I am listening now.

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?

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.