No Fake News: A Week with COVID19

Ahhh, what a date with disaster it has been! The one I’ve avoided for over two years. It has lasted all week, but I’m told I got off rather easy (so far), because for some people it just drags on and on and on…

I’ve walked hand in hand with cancer for several months now, have made peace with it in my own way, have learned to live and thrive even as it tries to hold me down. But I avoided “the other one” like the damn plague. Walking the other way, wearing a variety of unfashionable face coverings long after the style had gone out for most, scheduling four brief sessions of preventative acupuncture to try and keep it at bay. But it got me anyway.

Where was it? At graduation downtown, where several hundred folks went maskless indoors? Or the next evening at the Paul McCartney concert, where several thousand went maskless with the Green Giant behind? Maybe it was even at my place of employment, where many children and adults were able to make their own decisions about masking over a month ago, and the lion’s share chose to bid adieu to the pesky virus-catchers.

I kept wearing protection when and where I had to. So it’s tough for me to pinpoint where I stumbled. But stumble I did, and ended up with the dreaded COVID19. The misunderstood COVID19. The fake COVID19? Oh please, folks. If you can somehow still believe this, let me tell you beyond the shadow of a doubt, the global pandemic is not just some charade created to make some guy with orange hair and a mouth that needs to be permanently silenced actually shut it. Don’t put yourself in danger of being unvaccinated and getting sick just to perpetuate that lie. Believe me, a four times vaxxed sickie, I get it now how dangerous this virus really is.

Perhaps I got it because of all the unvaccinated Americans buying into conspiracy theories and other political nonsense drifting around. I’m trying not to be angry that I now have this to sort through in addition to cancer and the sudden death of my dear sister Marie, whose love and support would be much appreciated right now. But let me tell you, it’s damn hard not to think about “what could have been,” had we all not just gotten our shots and achieved herd immunity.

Now, instead of posting hiking pictures of beautiful landscapes, I can post fabulous telltale images of trying to live through another health scare.

I was probably in a pretty good position to get the menace. Not only have I been exhausted and moving at a pace too quickly for a human being with my health background to move (guilty!) I’ve also been under extra stress as well as mourning for Marie. So when I got the sniffles last Friday I took special note and made sure I got a good night of sleep with my fingers crossed that I’d sleep the symptoms away.

No such luck.

Saturday, and I gave myself a home test. From the very beginning I knew that I would get my first positive result. That little line next to the “T” has never come close to rearing its ugly little head at me. But it was loud and clear that day. Now it won’t go away. I was recently told that after infection, someone can test positive for up to ninety days. Yay, more stuff I never wanted to know. As if cancer didn’t already give me lots of unwanted knowledge.

My symptoms never really got worse, because I arrested them before they could, or that’s at least the way I’m thinking of it. I made calls to my medical team in Boston and got on Paxlovid, the latest wonder drug that seeks to stop the virus from becoming life threatening. No ventilators for this girl! Unfortunately, the drug, or perhaps the virus itself, caused some horrible side effects for me that have left me dizzy, unsteady, and exhausted. I’ve spent five days in bed, cursing the New England sunshine and listening to the traffic of those who are blessed enough to still stand up and walk, something that has become a major challenge for me. After combating some serious pain over the past six months, I’m aching again. I had to stop taking Paxlovid because of the side effects, and spend my Tuesday afternoon and evening in the ER to be sure the virus drug wasn’t having a drug interaction with the pill that is killing my cancer. My active life has ground to a halt.

All because of a virus that is supposed to be fake.

Honestly, I don’t know how many times I can “start over,” only to come up against another setback. Please send positive thoughts.

And I never turn down a good prayer.

Dear Mr. Truck Driver…

See? I got your attention. Now you think that I’m about to give my opinion on the trucker convoys in Canada and the U.S. However, that isn’t the focus of my blog. Instead, I’m going to write about a recent experience I had with a trucker on the the Massachusetts Turnpike, otherwise known as I-90, locally known as “the Pike.” From my house due East, the Pike is a dull stretch of seventy miles of highway to Boston, and where bad behavior is at a maximum.

Before I zero in specifically on my good trucker buddy, let me first reiterate a frequent complaint of mine: Some people just lose their cotton picking minds when they get behind the wheel of a moving vehicle. Where does common sense go? I just don’t get it. It certainly seems that all anger, frustration, and power tripping is released on fellow drivers. Stupidity is at an all-time high. Messing with the lives of others becomes some sick game, all in the name of getting one car length ahead of someone else, or in a preferred lane before someone else does.

Okay, now let me tell the story of my favorite trucker in the world.

On Monday, March 14, 2022, I was heading to Boston for my monthly check-in at Dana Farber Cancer Institute. Yeah, you got it. I have cancer. I’m being treated for cancer. I’m not going to Beantown to party, or see the Red Sox, or to an art museum Truth is, I’d rather be working than going to Dana Farber Cancer Institute. I’m going because I have to. If I don’t go I’ll die. I’m tired on said day, and it’s early in the morning. I’m minding my own damn business, going 70 miles per hour in the center lane the way I always do. Other drivers fly by me, getting nowhere faster than me. I know that. They apparently don’t.

I pass a trucker going at a reasonable pace, and take note of it, because I like to see truckers who don’t think they own the road, who don’t think that just because they’re bigger they’re better. This 18-wheeler, from a company that will be named below, was inconspicuous, as all trucks and cars are until they do something off the wall. This one was a few minutes away from doing just that.

Back in the center lane after passing a few vehicles that were going a little slower than me, I settled in. Ten minutes go by, and suddenly Mr. Inconspicuous Trucker is right behind me flashing his lights at me. As a general rule and as a longtime driver with a clean record and hundreds of thousands of miles on all over the United States of America, I don’t allow other drivers, whether they’re bigger than me or not, to decide how fast I go or what lane I drive in. So I don’t budge, which only serves to piss off Mr. Trucker. My line of reasoning is this: There are two more lanes to move into. Use them if you don’t like my driving.

He doesn’t see things my way.

His next move is to start tooting at me and swerving. Then, the worst thing of all: Tailgating. In a tractor trailer truck that can’t stop quickly should I need to put on my brakes for something. But I held my ground, and so did he. I took out my phone and made a video going over my shoulder, showing the lights of this shithead glaring in my rear window, as well as how close he really was to me. Close enough for someone to reach out my back window and touch him.

I get it, you’re saying, just move for him! It’s your own fault for not moving! Here’s where we’re different. It’s against my principles to cater to a moron like this, particularly when I’m not doing anything wrong. And here’s the funny thing: He finally passed me, and then we got tangled up in stop and go traffic. So I had plenty of opportunities to take pictures of the company name and license plates, and Mr. Trucker got nowhere from his dangerous behavior. Just for good measure, he indulged in the ultimate in blameless behavior, and hung his phone out the window to take pictures of me. Imagine!

I eventually lost him, went to Dana Farber, and got all good news. But this experience sat heavily on my mind and still does.

Did I call Goulet Trucking in South Hadley, Massachusetts? Yes, after I read some pretty nasty reviews that indicate that this is a company that really doesn’t care what their truckers are doing. Daryl, the fellow I spoke to, didn’t seem too interested in me, but I asked him to tell my trucker friend some of the items I’ve already expressed above: I was going to Dana Farber. I have cancer. I was going for treatment. If I don’t go I’ll die. This already sucks enough. Why did he have to make the experience even suckier?

You never know who you’re messing with, what they’re dealing with, and how you’re making them feel.

I did the only thing I could. But I know that it won’t do a lick of good. Mr. Trucker will go out and terrorize someone else. Then someone else after that.

This experience brings up a point that surfaces more and more often now: When we’re blatantly mistreated, who can we really turn to if a clear crime has not been committed?

And the bigger question: Can we all just act like decent human beings instead of total brainless careless asshats?

Who’s to Blame?

I feel like I’ve covered this subject in at least one other blog, but it’s worth discussing again.

The subject? Blame.

Whenever I turn around I hear someone else trying to get out of taking blame for anything, even the smallest mishap. As a teacher, this happens countless times per day, and it isn’t always my students denying wrong doing. I’m sorry hasn’t gone down with a fight, it died a quiet death when my bad and I didn’t do it came along, hand in hand. I’m sorry went so quietly, we didn’t see it going. We couldn’t give it a proper funeral. Rest in peace, dear words.

I’m sorry does make an appearance every so often, like a portrait of a long gone family member or lover, but it is usually not very satisfying. Unless it comes from someone whom is an upstanding and sincere person, it reeks of contamination and denial. In this case, I’ll take silence. Even the middle finger works better than a fake I’m sorry.

What’s the hardest place in the world to get another human to accept blame? I’ve been a lot of places, and in my opinion, there is no geographic location where an individual is more likely to say the two golden words. There are decent people everywhere, and there are crappy people everywhere. But I do believe this: if you are fortunate enough to be one of the aforementioned upstanding individuals out there, you live your life and treat others in a way that make it unnecessary in most cases to apologize. Sure, there will be times when you make a mistake (everyone does) because no one, as the saying goes, is perfect, and you will have to speak the calming words that you still have at your disposal and didn’t forget like most have. But you aren’t in the business to need them on a regular basis. You’re better than that. Precious people like you are everywhere in the world. The rest of us just have to find you.

One day several years ago I started to wonder when people started to dislike each other. Was it after World War II? The Civil War? The Industrial Revolution? When? Or was it in my lifetime? The 70’s, 80’s, 90’s? Perhaps it was my childish mind, or the fact that I had a lovely childhood, at least until my father died in 1977, but the 1970’s were still good years. Maybe it was the 1980’s, which were crazy fun, but also brought in technology that would eventually separate us and make us feel safe sitting behind a computer or later, a cell phone, treating each other badly. Whenever it was, we’re in big trouble now.

I try not to live my life around the news. I don’t watch TV and have not for years, but I do read headlines. I don’t read statistics either, but those headlines tell a lot of stories. Crimes against people based on skin color are well publicized. But has anyone taken note of the fact that crimes against helpless children of any and every color are skyrocketing? And against women of any and every color? Mass shootings are nearly an everyday occurrence, to the point that they’re easy to scroll by to get to something more gory. Can you hear the “I didn’t do it” ringing out through the bold print?

I’ve been around the world and around the country largely by myself. I’ve survived cancer and the deaths of the people I love most in the world. I’ve never lived in fear. But let me tell you: the things that I see going on around me make me not want to meet new people. I love and have big appreciation for the intentionally small circle of family and friends that I trust with my life. I plan to keep things just the way they are.

After several paragraphs of complaints, the question must now loom: Do I know how to apologize? Yes, I do. Do I apologize when I’m wrong? Yes, I do. Do I apologize when I feel someone has wronged me just to make peace? No, I absolutely do not. Shouldering blame for something that someone does to us doesn’t help anyone. It makes us feel like dog poop, and it makes the guilty party feel vindicated, and like they can continue their sucky behavior. Don’t do it. Because you already feel wronged over something you didn’t do, and the actual wrongdoer now has an open door to do it again and again. And will.

Let them. Save your honesty and integrity for someone who knows how to return it. You won’t be sorry. You won’t have to be.

Short Story: Love is For Everyone

I love writing and wish I could do it more. Writing is also really hard work. So it kind of rots when you submit something and don’t even hear back from a publisher or magazine or journal. That’s what happened with the following story, which I offered to a well known magazine early last year. Actually getting chosen for publication was a long shot, but receiving a rejection letter is always better than silence. Their loss is my blog’s gain.

When I sat down to write, I had been pondering the question is love for everyone? Even someone who is living with a death sentence? According to me, apparently so. Please enjoy “Love is For Everyone,” and tell me what you think either way!

LOVE IS FOR EVERYONE

              “Mom, stop thinking like that,” Nellie’s daughter Emma scolded lightly as they pushed through the door of the infusion clinic.

              “Emma, cancer just changes everything. The last thing I want to do is give up on love, but it seems like such a longshot now. I mean, Paul…” Nellie’s voice drifted off as she thought about how her longtime companion had moved away shortly after her diagnosis. They still talked occasionally, but he seemed to like his new life in Florida and wouldn’t be returning to Illinois anytime soon.

              “Mom, cancer has changed a lot of things, but it hasn’t changed everything. You’re still human and you’re still worthy,” Emma reminded her.

              “And this is it, hon. Last treatment.” Nellie shivered as Kathy, the familiar infusion nurse, appeared to greet them.

              “Nellie, you look more and more gorgeous every time I see you!” Kathy bubbled.

              “I agree,” Emma chimed in, tucking her arm inside Nellie’s.

              Nellie’s hand drifted up to the black headwrap she had learned to feel comfortable wearing as her chocolate brown hair thinned from her treatments. She felt attractive in a different and unexpected way now, like she had the beauty of strength, of surviving. She lightly squeezed Emma’s warm arm in return.

              “Thank you. I’m ready to get this done.” Nellie took a deep breath and looked toward the infusion area with its comfortable brown chairs and hospital curtains that many patients left open so they could chat. Her appointments were always early, so only a solitary man with slumped shoulders sat in one of the chairs, staring at the floor.

              “Another first timer?” Nellie asked Kathy.

              Kathy’s eyes pleaded with her for help. Nellie knew what Kathy wanted. Nellie would frequently offer a compassionate ear to patients who were there for the first time. Nellie loved to assist.

              Nellie wondered where the man’s support system was. He appeared to be alone. She moved toward him. The man looked frightened. When he lifted his head, she saw that he was also very handsome.

              “Hi, I’m Nellie,” she said, in an upbeat tone.

              “Hello, Nellie.” The man’s kind almond brown orbs drifted over her headwrap, her eyes, her smile, back to her eyes. “I’m Ed, and well, I’m terrified of chemo.”

              “Take my word, I know exactly how you feel. I was in your shoes eight months ago. And do you know what? Today is my last treatment. So, if I can do it, I know you can, too.”

              “You’re a lot braver than me! And it’s nice that you have family to be with you. I’m just a lonely old guy with no one around.” Ed lowered his eyes again.

              “Guess what, Ed? Forget about lonely! You’re stuck with me now! Emma has to run a few errands, so it’s just you and me!”

              Emma lifted her eyebrows to Nellie in surprise, because she always stayed for the infusions. But she gave Nellie a quick peck on the cheek and disappeared with a knowing wink.

              “I’ve had worse things happen to me!” Ed joked.

              “Kathy, I think we’re ready!” Nellie called, as she sat down in the chair next to Ed.

              His shoulders lifted and he leaned back, looking a little more relaxed.

              Nurse Kathy began to set up their infusions.

              “I admire your positive attitude, Nellie! How do you do it?” Ed asked.

              “Well, in this business, it pays to be positive, doesn’t it? Where would we be if we weren’t? This stuff is hard enough without being down in the dumps!” Nellie answered.

              “You’re right about that. But it sure is tough when you lose your wife, your kids live on the other side of the country, and you get cancer.” Ed shook his head.

              “I’m sorry, Ed.” Nellie sensed that Ed wanted to talk about his life.

              “I lost my Peggy three years ago. Cancer again. Took care of her for a year. And now here I am…” Ed’s voice drifted off as his eyes misted over.

              Nellie reached out and touched the top of his hand briefly before Kathy came over with his infusion bag clipped to a medical stand. “You’re going to do great,” Nellie assured him.

              She saw Ed tense up as Kathy asked if he was ready for her to access the port above his heart.

              “I’ll be good with you here, Nellie. But it sure will be harder after today! You’ll be off celebrating your last treatment and living life!”

              “How about we go get a coffee and a piece of pie once we’re done? You, me, and Emma will celebrate your first and my last!” Nellie gushed.

              “That’s something to look forward to!” Ed agreed.

              “Ready, Ed?” Kathy asked gently, about to start Ed’s first infusion.

              “As ready as I’ll ever be, thanks to this lady,” Ed beamed.

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?

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.

Happy Cancerversary to Me!

Since there aren’t that many people out there who want to celebrate my life and my journey with me, I’m just going to do it myself! Two years ago on this day, I was formally diagnosed with non small cell lung cancer. Of course the beast has been in my body for longer than two years, but it was confirmed on October 8, 2019, so this is the date I will acknowledge. My last two posts have recounted my trail of surviving the deadliest cancer out there. You can read them here and here.

I was on a train bound for New York City’s Penn Station last weekend when I started writing down ideas for this post, and decided that I would share my thoughts in two categories: What I’ve Learned, and What I’ve Accomplished, in the past two year. A few years before my diagnosis I was told by someone that I use the word “I” much too much, but screw him. I’ll be using it ad nauseam here to make my point, and I think I’ve earned it!

Ready?

What I’ve Learned

  • I’ve learned more about my strength and spirit than I’ve ever wanted to know.
  • I’ve learned more about cancer than I’ve ever wanted to know.
  • I’ve learned more about people than I’ve ever wanted to know.
  • I’ve learned that some people like you better when you’re down.
  • I’ve learned that some people are never going to like you, up or down.
  • I’ve learned that some people don’t have compassion unless something is happening to them.
  • I’ve learned that people throw the word “love” around but don’t know what it means.
  • I’ve learned that “love” really needs to mean more than just a word.
  • I’ve learned who my true supporters are.
  • I’ve learned that to survive, I had to let go of those who aren’t.
  • I’ve learned that people will crush you in the worst of times.
  • I’ve learned to keep going in spite of them.
  • I’ve learned that me with cancer and me without cancer aren’t that different.
  • I’ve learned to live my life in mostly the same way even though I have cancer.
  • I’ve learned that terms like “fighter” and “warrior” only serve to move you away from being YOU.
  • I’ve learned to reject those terms.
  • I’ve learned that for many people, my illness is over, even if it will never be over for me.
  • I’ve learned not to underestimate the power of cancer.
  • I’ve learned not to underestimate the power of ME.
  • I’ve learned that it’s okay to let my “strong” guard down once I shut the door on the world outside.
  • I’ve learned that the world keeps turning, even though I have cancer.
  • I’ve learned that my world keeps turning, even though I have cancer.
  • I’ve learned that tomorrow isn’t guaranteed for anyone.
  • I’ve learned that my life still matters, even if I have cancer.

What I’ve Accomplished

  • I’ve lived through cancer in my lung, neck, sternum, hips, pancreas, stomach, and chest wall.
  • I’ve been on four road trips.
  • I’ve written a 42,000 word book about my cancer journey. (Unpublished)
  • I’ve begun another book about a woman living with ALS.
  • I’ve written 45 blog posts.
  • I’ve walked/hiked 3,350 miles. (Not a misprint.)
  • I’ve lost me.
  • I’ve found me again.
  • I’ve continued my life in full for two years, with cancer.
  • I’ve ridden 110 miles on my $100 bike.
  • I’ve revisited 18 states.
  • I’ve booked my first trip out of the country since summer of 2019.
  • I’ve rebooked and gone on two of the three trips I had to cancel for cancer.
  • I’ve continued my teaching career through COVID19 and cancer.
  • I leased a brand new car but kept my old one!
  • I was debt free for a year.
  • I’ve used up two of my nine lives on cancer.
  • I’ve found solace in art, but am no great artist!
  • I’ve explored New England more intensely than ever.
  • I’ve found friendships with a few of the greatest people anyone could possibly ask for.
  • I’ve left friendships that weren’t productive.
  • I’ve been blessed with the constant love of three family members.
  • I’ve left family relationships that weren’t productive.
  • I’ve requested no sympathy.
  • I’ve held fast to my dreams for the future.
  • I’ve tried to help others with cancer to do the right thing.
  • I’ve survived and thrived because I LOVE LIFE.

I rest my case as I look toward the future.

Coming Clean, Round 2

Me at 53, after cancer, Round 1

It’s inching closer, my cancerversary! Less than a week away, when this goes public. I don’t spend a lot of time thinking about my journey anymore, but most people don’t know all the crazy details, so I’m letting them be known for anyone who cares to read. Last week I recounted my first “round” of cancer and treatment. You can read the post here. All involved were hoping for a knockout punch that would last a lifetime, but it was not to be. After radiation to my lung and neck, and a year of targeted therapy, I noticed a small bump on my right flank. My oncologist sent me to a dermatologist in November of 2020. The skin guy did a biopsy in the office, and as I awaited results I headed down to South Carolina to see my niece. Surrounded by love from her and her three adorable dogs, we decorated her Christmas tree, went bowling, and shopped for homemade soap at a local farm. A huge celebration occurred when the results came through: No new cancer! The bump should go away. Life went on happily!

If the bump had gone away and life had gone on happily I probably wouldn’t be writing this post. The next month, just a few days after my 54th birthday, I went to Boston for a PET scan, with my fingers crossed that I would get the coveted news that I had No Evidence of Disease (NED), a designation that I had cut so close during the summer. I wasn’t feeling well, but I still had hope. Feeling crappy had become a way of life even before cancer, and after treatment it was even more so. Fatigue and exhaustion would hit me and stay for a week or more, but I’d keep pushing through to feeling better. By this time I had put my life back on track fully, I was on pace to shatter my yearly mileage record for walking and hiking, road trips were happening again, and I had great hopes for the future.

Which made the results of my PET scan all the more shattering: I had more cancer. That bump on my back meant something. It had not gone away, and was now lighting up as cancer on the scan. But there was worse news than that, as cancer had also infiltrated several other places, including both my hip muscles, my upper stomach, and worst of all, my pancreas. I won’t soon forget receiving this news in the cold of COVID19 December, all alone in Boston as the world got dark, and someone who is supposed to love me making it even darker. That last part is another story in and of itself, and at this point I’m over it. From here forward I’ll keep this post about cancer.

Now what? I was surely going to die, with cancer happily invading my space again. I would have to switch medications. My oncologist’s suggestion was a clinical trial for a brand new tyrosine kinase inhibitor, or TKI, like the one I was currently on, but considered a”next generation” drug, called Repotrectinib. Before I could go on it I had to endure a new series of scans and blood tests, and a fresh biopsy to be sure that the new metastasis was the same as the old one. I also went back to South Carolina to dog-sit my favorites canines while my niece went to Florida. Perhaps it would be my last trip there.

I had so much new cancer I was having trouble keeping track of it, so I made this fancy diagram:

My rendition of me, loaded with new cancer

Cute, isn’t it? Yeah, unless it’s you.

I waited a tense month for the drug company to accept me into the clinical trial. My cancer was growing, making the likelihood of death all the more certain if the new wonder pill didn’t work. The tumor on my back continued to grow and topped off at 3.3 x 3.0 centimeters before I started treatment. Not only was it disgusting to look at (this one was actually like a skin tumor and growing on the outside, unlike the tumors in my neck, which were under the skin,) but it was also bleeding and getting in the way of life, because if it rubbed against anything it would gush blood. I had to keep it covered 24/7 and couldn’t sleep on my right side. A few times I had to cancel plans with friends because I had to take care of my tumor. Yay, me! (Eye roll.)

By the time I started treatment in late January of 2021, all my tumors had grown. In centimeters, my pancreatic lesion was 2.1 x 2.0. Left hip: 3.2 x 1.9. Stomach: 2.7 x 2.1. And tipping the scales at 8.4 x 3.8, the right hip tumor. They had gained considerable steam in a matter of a month. And that bleeding tumor in my side? Any information that I found on lung cancer metastasis to soft tissue was extremely grim. I was literally dying for treatment. Again.

Somehow, I kept going. Shout outs to several friends and a few family members for sticking with me and helping me through. Remote learning saved my finances. I got an accommodation from my school system to teach from home until the end of the school year in June of 2021. The tumor on my back, as disgusting as it was, turned out to be a creepy blessing, as I was able to watch it shrink down to nearly nothing and knew the medication was working. Within six weeks I didn’t need to cover it any longer, and it stopped bleeding.

I kept hiking and walking. Went back to South Carolina in February, revisited my beloved Southern Utah in April, took two fantastic road trips this past summer.

I get scanned every eight weeks on the clinical trial. I don’t feel fabulous most of the time, and am currently sore as hell and have weakness in my legs, but hey, the bottom line is that I’m still able to do everything I love. As long as my luck holds out, I’ll be heading to Costa Rica for Christmas!

Let this sink in: Thus far, I have survived cancer in my lung, neck, hips, pancreas, flank, and stomach. Last scan, in early September, my hips and pancreas were clear, with the stomach and flank tumors significantly reduced. Still hoping for NED!

Sigh.

And what a two years it has been! Bring on the cancerversary!

10-2-21, Roosevelt Island, New York City

Coming Clean, Round 1

Here we are again, heading into the autumn season. At one time, this is when I’d be mourning summer, reminiscing about the road trips I’d just taken, and dreaming of the next years’s road trips. Almost unbelievably, I’m still doing all that, but for the past two years, September is also when I’m faced with memories of the beginning of my cancer journey. Yes, I’m coming up on my second cancerversary with Stage IV Lung Cancer, a diagnosis that few are lucky enough to survive. So I have to be prepared when I look at my Facebook memories, because chances are 100% that I’ll be seeing myself with a tumor growing in my sternum, the first sign that there was something not completely right in my world.

To “celebrate” the upcoming anniversary of my diagnosis, I will “come clean” with the many details of my journey of staying one step ahead of death, sometimes not even that. And because I know that I’ll need more than one post, I’m calling this Round 1.

I saw the lump in my sternum in late August of 2019. Felt it before then, a strange pulling feeling in my neck. And I was exhausted. But the summer was great. I had amazing road trips in the southern U.S. and southwestern U.S., and an incredible journey to Sri Lanka. Other than being really tired at the end of the day, I had no other sign of what was coming. I hiked hundreds of miles a month, and kept up my crazy schedule otherwise. Frequently I proclaimed myself a “lucky girl” for the life I was leading.

The 2019-2020 school year started well, my sixteenth year as a Special Ed teacher. Two weeks in, however, I began to feel intense pain in my neck and head, so bad that one day I had to leave and go to the ER. I also had the school nurse look at the lump in my sternum. She measured it at one centimeter and suggested I get it checked out. I didn’t pay much attention to it until I started to ache from the waist up, so badly I couldn’t think straight.

Thus started a string of doctor appointments, ER visits, and scans. An X-ray showed something happening in my lung. A CT scan was next. I sat on pins and needles while awaiting results, trying to function correctly while trying to convince myself that my life wasn’t falling apart. It couldn’t! I was a lucky girl, traveling and doing so many things I love to do!

My primary care doctor soon uttered the word “oncologist,” not because she thought I had cancer, but because she wanted to be sure I didn’t have cancer. And so, I entered the world of “the Big C”and oncology, hopefully for only one visit. That was not to be. After an overnight hospital visit, a series of scans including the all-powerful (and expensive) PET scan, and a ton of misinformation, I was told in one of my now-frequent ER visits, that I indeed had cancer. An “incidental finding” from a brain MRI also showed a tiny tumor, usually benign, called a meningioma. I have not revealed this until now, because I feared brain cancer. Over the past two years my little buddy has proven thus far to be unchanged and something that has likely been there for some time. Meningiomas are actually quite common. But at the time, it was more devastating news that would get worse before it would get better.

Two draining months went by as I ran from doctor to surgeon to specialist to radiologist and back to oncologist. The road trip I never wanted to take. The news was grim: Stage 3b non small cell lung cancer, (NSCLC) with radiation and chemotherapy in my foreseeable future. My team of local oncologist and radiation oncologist were hoping for “cure” but also sent out the biopsy tissue from my tumors for what is called biomarker testing, which could change the entire course of my treatment, if I was “lucky” enough to have one of the eight biomarkers in lung cancer. It could be the difference between taking a pill to kill cancer (what???!!!) by targeting a mutation in my tumors, or going through the common course of treatment, chemo and radiation. While we awaited results, a node on the side of my neck started to grow, and the tumors in my sternum and lung continued to get larger. I also had to have a biopsy on a growth in my throat that turned out to be benign, but that held up treatment by a couple of weeks. My dentist even chimed in with the possibility of a tumor in my gum. All arrows seemed to be pointing to death. Metastatic cancer. Everywhere!

The truth was that I had active and growing cancer in three places: lung, sternum, and neck node. The local team stuck with the 3b designation. Behind the scenes, I was considering a trip into Boston, about 75 miles from my Western Massachusetts home, or at least getting an online second opinion. Dana-Farber Cancer Institute is consistently in the top five cancer centers in the country, and friends were telling me that I needed to go there. Admittedly, I dragged my feet, because I thought I was doing okay with the local hospital. But I had the good sense to talk to my oncologist about it, who sent a referral. His staff set up an appointment for me, which was after I had already started radiation, but was the very day before I was set to start chemo. How’s that for timing?

Starting treatment was at least going in the right direction, or so it seemed, but the worst news of all came through: seven out of eight biomarkers came through as negative, so there would be no pills for me. So much for being a “lucky girl.” Bring on the chemo!

November 13, 2019 is a day that lives in infamy for me, for it’s the day that I went to Boston for my appointment at Dana-Farber. It’s the day that I found out that I was in Stage IV, but that I indeed had a biomarker, the eighth one, ROS1, and that I could stop radiation, cancel chemo, and swallow a pill! Two weeks later I started a drug called Rozlytrek (entrectinib) that by some miracle shrank all three of my tumors. The one in my sternum went away altogether. The other two shrank enough that I could have consolidative radiation therapy, that had the possible promise of a long life restored!

For most of 2020, things were moving steadily in that direction, even through COVID19. I had radiation on my lung tumor, and later, my neck node was radiated. Whew, what a cancer ride! This looked like the end of it for me! Had I ever lucked out! Imagine, possibly cured of Stage IV Lung Cancer!

I had lucked out. But it wasn’t over. I wasn’t quite that lucky.

Before I could even enjoy winning round one, round two was ready to take me to the mat.

Me, one year after diagnosis, road tripping between rounds one and two

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.