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.

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David and Goliath

As I enter the first month since the beginning of summer where I don’t get slammed with another transfusion just as I am rebounding from the last, the vice grip of pain on my head has finally begun to ease. I forgot what it felt like to not have searing pain in my neck unless holding my head in precisely the proper position, with little room for variation. The clamp squeezing my temples, for the most part has disappeared – until I overdo, then it threatens to return. Most thankfully is the release from the lockjaw pain that clenched my jaws and shot into an ear with just the right bite. Oh, and the ability to sit for more than 10  minutes without burning pain in my hips and legs – huge.

I forgot what post-treatment felt like, but as I experience less muscle and joint pain, along with losing the vice grip, and the further out I get from the last treatment, the more exciting it becomes. And the more I dread the next treatment in November. However, if the nausea, mind-numbing fatigue and pain are the price I’ve paid for my last clean scans and blood tests, I’ll take it. Three months payment for a number of years of life, not a bad price to pay. Especially as I look forward to a new grandbaby in a few months.

As I enter the maintenance phase (four more treatments at 12-week intervals) of the clinical trial and begin to feel more like the person I recall being before embarking on this new journey, I can’t lose sight of the fact that I am winning battles, but the war is far from over. While Dr. Hake didn’t place much importance on my elevated LDH  level (LDH is most often measured to check for tissue damage) – something to monitor, maybe part of the side-effects of treatment – nor mention the small lesion on my liver, which they have diagnosed as a benign hepatic lesion, (which has not changed between two CT scans) I can’t help but wonder if it’s not some melanoma spies hanging around behind enemy lines, waiting for the right moment.

I’ve researched enough to know that melanoma is a stealthy bugger. I’ve researched enough to know that I can’t take anything for granted. I’ve researched enough to realize I have to do everything in my power to not allow “the right moment” to occur when those spies could call in more forces.

Therefore I focus on diet, fitness and rest – the only weapons I have in my control  (besides applying sunscreen) to assure that I am David and melanoma a mere Goliath. I have won the battle, but the war is far from over. Right now I have to gather a pile of good stones and invest in a better slingshot.