Coming Clean, Round 2.5

It’s always something.

Have truer words ever been spoken?

I’ve been kind of quiet on social media as of late. Busy, yes. Holidays are like that. But there’s another reason: My aching back.

My aching back started its aching in September, shortly after I started my teaching year. The first week of the school year was glorious. I felt great for the most part, then the pain started and has not let up for months now. I’ve been in physical therapy for a few weeks, and was supposed to get a cortisone injection before the holidays, but the insurance company said no, I have to do six weeks of PT first. Let that sink in: I have to live my life in pain for weeks before they’ll let me have something that will allow me to get back to my normal activities. It’s an old, old story. Pay for insurance every month, whilst being at the mercy of the faceless suits living pain free existences in some hidden office, who knows where.

This isn’t a rant about insurance companies. It’s a rant about another old, old story.

It’s always something.

Hey, as far as cancer is concerned, I’m doing great. And you know what? I’d love to be enjoying it right now. But I really can’t, because of my aching back. This pain has been worse than anything cancer has inflicted on me in the past two plus years. I want this to be the worst thing that I have to deal with. I’m not without hope. Somehow, I’m not depressed. But unlike cancer, my back is holding me back from keeping up my level of hiking, walking, and fitness. It has taken a big bite out of what keeps me going. Herein lies the real reason that I’ve been so quiet on social media: I have not done a real hike since late November, and most of my posts are about hiking or traveling. Okay, the New England weather is involved too. But this cycle needs to be broken. ASAP.

I’ve come to accept pain as a normal part of my existence. This realization hit me a few days ago. A real WTF??? moment in my former semi-charmed kind of life. So I carried my new acceptance around briefly before I stopped in the middle of everything and said one word.

NOPE.

I absolutely, positively DO NOT accept this pain as part of my life. This pain has to go buh-bye, and it will. If I can survive Stage IV lung cancer, believe me, I will get through this back crap, too.

Is this a play for sympathy? Another big NOPE. I’ve shunned sympathy from the get go. Not interested, any more than I am interested in being a hero or a warrior, or getting sad face emojis on Facebook. In fact, I have done everything I can to appear myself, even as I struggle to get up a flight of steps or carry things without feeling like I’m breaking in half. I’m well aware that there are people out there who have to deal with this kind of disabling condition for the rest of their lives, who have dealt with worse for longer. Same with cancer. I’ve lost several friends and acquaintances to this hell that I’ve managed to survive in spite of statistics screaming out that I wouldn’t. Truth be told, in a chapter from the “life isn’t fair” department, one of my former students is living his last days on this Earth because of this beast. By the time you read this, he will likely be gone. No, not interested in sympathy. Because many people have it a lot worse than me. And not much is going to stop me from believing that my fun isn’t over yet.

Am I done adventuring? NOPE.

I’m going to get through Round 2.5: The Bad Back. If I can get through Cancer Rounds 1 & 2, I can emerge from this too. Scary thing is, all this struggle for survival is getting sickening. But what’s the alternative? Nothing that I’m interested in. Yet. I wonder though, does the human spirit just finally say, I’m done? Admittedly, I’ve whispered it to myself a time or two, but that lasts about ten seconds. If only I could just get to a point now where this back of mine allows me to enjoy my physical pursuits without pain and exhaustion.

Hey, I can still walk and think and read and write. I’m killing my PT exercises. I sleep like a pro. My house is still clean and my teaching job gets done. The bills are paid. I could name many other blessings that make me keep fighting the fight. Yet after all is said and done, I have to accept that it’s always going to be something. Could I maybe just get a rain check for a month or two?

Dear Fellow Humans: Breathe

Well, here we are again: the “Christmas season.” The season of joy and giving and spending time with people that we love. Of reaching out to our fellow humans and showering them with goodness. Of making sure the needy have something to look forward to. Of…

Oh, wait, does this sound like us? Or is this more accurate: the Christmas season means that we run up a big electric bill making sure that our lights look better than everyone else’s in the neighborhood. That we are fighting each other for the closest parking space at Walmart. That we’re trampling our fellow shoppers to get the flat screen TV for fifty bucks off while supplies last. That our children don’t know that Christmas is really about the birth of Christ, not the presents that they’re getting.

That last one is a true story. As a teacher, I deal with around fifty students on a daily basis (but not all at one time!) One year, I was really tired of hearing the twelve in front of me talking nonstop about what they were expecting under the tree. Let me tell you, these weren’t the ten dollar variety presents, but big label sneakers, ridiculous video games, and the latest technology that they didn’t have the know how to need. Add up the prices and I could get up and back across the country a couple of times. But I digress. That year, I put my students to the test: what does Christmas really mean? Most of them said, “Opening presents.” Only one could tell me that it is a celebration of the birth of Christ, and if she didn’t go to church she would have been at a loss, too. I’ve never forgotten this day.

This post isn’t about religion. It’s about the direction we’re going in as people. Are we heading toward a good place? No, we’re screwed, and only getting worse. (IMHO.)

We need Christmas right now like we need a hole in the head, to coin an old saying. This holiday brings out the worst in so many people. I can’t wait until it’s over. Escaping has always been my way of dealing with it, and if all goes as planned, this year won’t be any different. If I look happy in the pictures in this post, it’s because I’m celebrating Christmas in my own way: far away from the nonsense that our traditions have turned into. Nothing feels better than warming a plane seat after handing out the gifts I had to endure long lines and bad attitudes to purchase.

Even without Christmas, we lack empathy. Take it from me, I’ve been living with a chronic illness (called advanced lung cancer, and no, I didn’t smoke!) for over two years now, and it has become very clear to me that other than a handful of amazing family members and friends, most don’t care what you’re going through. I’m not looking for sympathy, but courtesy would be nice. And courtesy is a dying art.

You know what would also be nice? If humans would just calm down. Several times a day I see people freaking out in everyday situations. My biggest pet peeve is the way we act when we get behind the wheel of a moving vehicle. No matter how big the vehicle is, from a standard car to an eighteen wheeler, drivers are in a gigantic hurry to most times get absolutely nowhere by weaving in and out of traffic at top speed, tailgating, and driving distracted. Good luck to the hapless squirrel, or worse, the hapless child getting in the way. Daily, these jokers take my life into their hands, not to mention their own. And this is only one example of bad behavior that has encompassed our nation.

I try not to focus on bad news, but avoiding it these days is getting to be more of a challenge. Maybe it’s because social media constantly has some awful tragedy thrown in our faces, or maybe it’s because we can’t handle not getting our way about something without going to the extreme to avenge our hurt feelings.

And now, we have the mania of Christmas to add to the hysteria, the glut of advertising and garish tinsel, ready made trees, and decor that varies from French fries to ballerinas and includes every interest in between. May I remind you that on December 26th it will all be abandoned in the yesterday’s news aisle and we’ll then be inundated with red and pink Valentine’s hearts for the second most annoying “holiday” on the calendar?

Heaven help us.

Think good and hard the next time you get yourself into a twist to beat someone to the next red light, or to shove yourself into the checkout line in front of an elderly person. Think about what you’re really going to gain.

Breath, folks, breathe. This stuff is not that important. Save your energy for when you really have to deal with something big.

Stop Calling me “Sick”

I’ve been called a lot of things in my life, and many of them are unprintable. I’ve been called a lot of things since I was diagnosed two years ago with Stage IV lung cancer, and while most of them are probably printable, a few of them are out of this world unbelievable that someone would have the gall to refer to me in such a fashion. One term that I’m really done with is “sick.” According to several people, I’m “sick.” Sometimes the word is inserted into a favorable sentence, so I guess that makes it okay. An example: “No one would ever know that you’re sick.” Am I supposed to be flattered? Would you be flattered if I said this to you? The truth is this: Your “sick” description only moves me further away from who I’m fighting to be again: ME.

How many times do I have to say this? How many people do I need to tell? If I’m not interested in being a “warrior” or a “hero,” why in heaven’s name would I want to be “sick?” The irony is that if I didn’t tell someone that I live with cancer, they wouldn’t even know it. I have stopped telling most people my story, have stopped sharing it on Facebook, have refrained from updates and day by day reports. But some of those in the know have my dossier open in front of them, and instead of being the “Barb Lee, writer, blogger, and traveler,” of the past, I am now “Barb Lee, full-time cancer warrior and permanent sicko.” Never mind that I continue to do all the things that make me who I used to be. Now, my illness defines me.

For the record, are there times when cancer consumes me? Of course. In fact, now is one of those times. As I type this I feel like crap. My back hurts, my gut hurts, my head hurts, I want summer back, and I want this pain to go away. I want my medication to keep working, though I fear it has stopped being effective. I don’t want to be “sick” in the eyes of those who think I am. I want to have another round of great scans next week and keep going in the right direction. Right now, none of those things are happening or seem like they will work out, and I’m floundering.

But here’s what history tells me: I always manage to turn the corner. Though it’s always in the back of my mind that someday I won’t turn the corner, I have not reached that particular curve in the road yet. Nor am I planning to any time soon. Does that sound sick?

And how about this fact: I really do love being a survivor. There is something pretty special about being a survivor. A lot of folks out there claim to be survivors, but only some of us can really offer hard and fast proof of cheating death. So should I accept being labeled as “sick” because in order to be a “survivor” I had to come from a place of being severely ill?

Then there’s that pesky little fact that Stage IV cancer isn’t curable. But what the general public doesn’t know is that the cases of people living well beyond their expected expiration date are on the rise in a major way. Big Pharma isn’t withholding a cure for cancer to make money. Big Pharma is plugging away behind the scenes to keep making better and better drugs so that cancer patients like me can continue to live our lives like we always have. There ain’t nothing sick about that!

Here’s a fact too: a pretty high percentage of those that refer to me as “sick” don’t do nearly as much in a day as I do. Maybe they’re the sick ones?

I didn’t feel good for a decade before my diagnosis. Almost always, something didn’t feel right. For a while, I ran doctor to doctor trying to figure out why a woman who was in great shape, looked as healthy as a horse, and did everything she could to stay that way, felt like crap. No one had answers. Some of the individuals I pleaded with for help didn’t believe me. One of my favorite comments was, “Are you depressed? Do you need an anti-depressant?” I gave up after a while and just dealt with whatever I was feeling inside. Until I got the big answer in October of 2019. Quite an eye opener.

Sigh.

The moral of the story is this: I don’t feel that much worse than I did when everyone thought that there was nothing wrong with me, when what was really wrong was unknown. No one thought I was “sick” then. The only difference is that the secret is out, and it’s a big ugly one. I’m still the same ME, and I don’t accept the “sick” label any more than I accept the “warrior” label.

Please…STOP.

Rediscovering You

Here’s a secret: when you first start blogging it’s pretty tough to come up with subjects to write about. Then you get a little bit of leverage, a dash of inspiration, and maybe even a crappy disease, and suddenly, you’re golden! You have a whole list of ideas! That’s what happened to me. It’s for this reason that I’ll follow up my last blog post immediately with the final point of my advice for living successfully with a chronic illness. I have many other subjects to get to and don’t want this final thought to get buried in a bunch of other posts.

Listen, I’d really rather be writing about traveling and writing books, which is what I intended this blog to be about when I first put it together. Thankfully I can still talk about that stuff, but I’ve also been granted this opportunity to help others with my success at battling a chronic disease, so I’m going to take it. It’s certainly helpful to think this way: that this new struggle I’m dealing with is an opportunity, not just a burden. You will need to think this way frequently. To say “always” is not realistic. You can’t do anything always. If you can do it eighty percent of the time you’ll be doing darn good.

To review, my ideas for continuing to thrive with a chronic disease are:

Get the best medical care possible

Seek no sympathy

Find new ways to do what you love

Find new things to love

Surround yourself with positivity

And the final point, which I’ll be expanding on today, is:

Don’t let your illness define you

Since announcing that I have cancer I have been labeled as a “warrior,” an ass kicker, and a bitch, (though that’s not a new designation!) and have been glorified, mourned, pitied, bad mouthed, and name-called. Everyone knows what I am, has a character for me to play. Though many of these identities are well meant, what no one really accepts is that the only identity I want to identify with is ME. When you are first diagnosed with a serious illness the processes that you have to go through to continue to function and/or stay alive can strip you of who you are and who you used to be, even though you may look the same on the outside. I consider myself pretty lucky as far as the cancer treatment I’ve received is concerned, but I’ve still had to deal with the biopsies, scans, blood tests, and procedures that leave me bruised temporarily, and sometimes scarred for life. Additionally, through all these the specter of early, sudden, and impending death has bore down on me more often than not. All the while, the biggest struggle has been to find myself again while others label me as something and someone else. No one realizes that while they indicate that I am now somehow “different,” I just want to be the same old me, though with an extra full plate to deal with. It’s because of this that I’ve stopped sharing a lot of my information, though I plan to”come clean” in my next blog posts, however many it may take. (Yeah, maybe more than one. I’ve withheld a lot of gory details.)

My two year “cancerversary” is coming up next month. In the last twenty-three months of my life I’ve been told that I must be “miserable.” (I’m not.) Some have treated me as if nothing is wrong. (Shame on them.) I’ve been counted out. (Sorry to disappoint you. Wait, no I’m not.) Worst of all, some like me better now that I’m “tainted” in their eyes. (They don’t know that I’m still happier than they’ll ever be.) In the pursuit of finding ME again, I’ve had to dodge a hell of a lot of stupidity, hurt, and crisis. Nevertheless, these days I’m hitting ME again pretty closely and sometimes even getting a break from being Cancer Girl. I guess I won’t ever be the same carefree person I was before, but when I think this way I realize: Everyone has their crosses to bear. If I didn’t have cancer I’d be worried about getting old, losing my figure, or not having enough money, things I don’t even think about now. Getting old will be a privilege. Bring it on! My body still looks pretty good, all things considered. And I’ll always figure out how to survive monetarily. Hell, I’ve survived Stage IV lung cancer!

Am I proud of that last point? You bet your bottom dollar I am. Of all the things I’ve been called, “survivor” is the one I accept. On MY terms. Find YOUR terms, and stick with them. Find yourself again, accept the differences, embrace who you are and how much BETTER you are now that you have overcome the disruption of your life.

In the meantime, please enjoy the photos of ME still being ME.