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?

The Real Meaning of MY Christmas

Happy New Year! Yeah, I know I’ve been absent for a few weeks and am a day late and a dollar short as usual, but like mostly everyone else, my holidays were darn busy. For Christmas 2021, I was supposed to resume traveling internationally by enjoying a trip to Costa Rica. Yet as the day got closer, I knew it wasn’t the right choice. I’ve been experiencing some pretty intense back pain for several weeks now, so that was the first issue that made me question if I was doing the best thing for me. Add the possibility of getting hung up in a foreign country due to COVID19, and the cost of being tested to have the privilege of boarding the plane home, and all arrows were pointing toward exercising my cancellation insurance and waiting until circumstances are better all around.

The decision was still a tough one. I wanted to resume my life of seeing the world, and this was a huge step in the right direction. My last trip out of the U.S. was summer of 2019 in Sri Lanka, before my cancer diagnosis, and I’ve been struggling to be me again since then. Cancelling anything, especially trips, is just not like me. Still, the gnawing inside me said that it wasn’t what I should be doing.

So I cancelled.

Then, a golden opportunity arose.

Even before that, something pretty incredible and highly unlikely took place: no cancer showed up on my last scans taken December 20th! Does this mean that I’m cured? That cancer will never be a part of my life again? That cancer is no longer a part of my life now? That treatment changes or ends? No, it doesn’t mean any of that. It “only” means just what I wrote: cancer cannot be seen. Meaning: it’s probably still there, and will likely come back, but the medication I’m on is controlling it very well for now. How long it will last, no one knows. I can only hope it will be for a long time. This doesn’t diminish the miracle that brought me to this, from where I was a year ago. If you know anything about metastatic cancer, I’m damn blessed. If you knew anything about my cancer specifically, well, I’m a long way from where I was in December of 2020. Read about my roller coaster journey here and here.

The table was indeed set for that golden opportunity.

As soon as I told my niece that I was thinking of cancelling my trip to Costa Rica, she invited me to South Carolina to spend Christmas with her. Yes, this was exactly what I needed: a familiar place where I could rest if necessary, a faithful black dog for quiet company, and maybe even some warmer weather. Not perfect Costa Rica weather, but South Carolina would do! And Costa Rica doesn’t have my niece and her dogs!

I just had to come up with reasonable airfare. From years of traveling at Christmastime, I recalled that December 24th to the 31st are usually the cheap dates. This remains true! I got a great fare and would soon be on my way! But not before wrapping and distributing many presents, falling on black ice, receiving as many presents, seeing friends and family before I left, battling crowds in the stores, starting PT for my back, working full time…

My last two posts are a short story I wrote several years ago. Titled “The Real Meaning of Christmas,” it’s a tale about a woman who disdains the holiday, yet finds her own peace in the season. Hmm, sounds like art imitating life! Because of course, that’s just what I did.

Long before cancer, Christmas was a tricky time of the year for me, and remains so. For more than twenty years escaping has been my way to combat ambivalent feelings about Christmas and what it has come to represent in our culture. Most of the time I would run off somewhere and spend the holiday alone, sans blinking lights and jolly men in red suits. South Carolina is my new favorite escape, and I’ve even learned to appreciate my niece’s special brand of hospitality.

We have a routine whenever I go and visit: bowling, a local farm, ice cream, Chinese food. I’ve gotten to know some of the local people and am always made to feel welcome. That naughty blond pup above vies for my attention with her darker brother while her mom spoils her rotten. Usually when I show up the weather gets thirty degrees colder. Not this time! It was in the 70’s all week. My back started to feel a little better, I got lots of sleep and lots of love, collected and gave more presents, and had turkey dinner left over from Thanksgiving, when I couldn’t be there. I found the real meaning of MY Christmas, and made the correct choice for me.

Perhaps I’ll never really love Christmas again, but I’ve made progress.

I had a great holiday, but I’m glad it’s over for another year! Bring on 2022!

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.

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.

Positively Positivity

Whew! I was really hoping to be back here long before now, but guess what? I recently returned to face to face teaching, with students in the same room for the first time in over a year. After working remotely followed by an accommodation due to a serious underlying illness (advanced lung cancer…yikes!) for the entire 2020-2021 school year, I’m in front of the kids again for real. Masks are required for everyone, so it isn’t quite the same, but I have to admit that it’s been a mostly positive experience for me to be back in the routine I was in for many years before my cancer diagnosis. In fact, I feel quite normal, and can even sometimes forget that I have a deadly disease. Add last week’s great scans to that equation and it makes for some happy times. But heck, what a struggle to get here, and believe me, I’d be a fool to think that it’s going to last. Which doesn’t mean I’m not going to enjoy the break until the next big cancer event, and that I won’t hope and pray that I have lots of time before that happens.

How did I get to this more comfortable place?

I got (and continue to get) the best medical care possible.

I asked for no sympathy.

I found new ways to do what I love.

I found new things to love.

I surrounded myself with positivity.

I didn’t (and don’t) let my illness define me.

Please click the links above to read previous posts on how I live successfully with a chronic illness that initially spun my world around and still continues to at the drop of a hat.

In this post, I will discuss point number five, surround yourself with positivity

Let me put it right out there: you don’t need people throwing around their own special brand of negativity when you’re already dealing with more heartache than most humans can handle. Do you know what it’s like to have a needle in your arm and lie in a tight, noisy machine while it scans your brain? Then to get out of that machine and get in a different one to scan most of the rest of your body? How about radiation? Ever had it? Or, think about what it might be like when you just want to live your life but you can’t because you have to do things to save your life. Now, add a negative person or two to that and aren’t you feeling extra super sucky? Yeah, I’ve been there, done that.

So, what do you do? The solution is simple to say, difficult to accomplish. Complicated, because the negative individual is oftentimes someone we love and we think we have to be “nice” and let that person chip away at us when our health woes are already doing that, because to get rid of them is “mean” and we just don’t dare cross that line. Listen, there’s no definitive proof in medicine that stress and unhappiness cause diseases and illnesses to fester inside of us. But last summer when I was in Boston for three weeks receiving radiation I was under siege, being called every ugly thing in the world by someone who claims to love me, and the emotional pain I was feeling was palpable. This was on top of being off my cancer medication and limping around Boston five days a week to get my treatments, being away from home, being masked several hours a day in heat and humidity, and wondering if the radiation was even going to work to save my life.

I know now that the radiation did its job pretty well, but five months later I had metastasis in my lower body, and guess what? The abuse continued. When I was sitting around a medical facility alone because of COVID19, too far from home, and fearing for my life again after a pretty good run at cancer, the abuse didn’t stop. I still remember that cold December night very well. I had just turned fifty-four. And I certainly wasn’t getting what I wanted for my birthday.

Alas, I have gained control of this situation since then. I was “mean.” I wasn’t “nice.” I had to avoid this hurt and pain at all costs, and I still do. I’m not much on sidestepping problems, but then I never had cancer to deal with. I danced around this blemish in my life and a few others that threatened to bring me to the ground. Sorry folks, it’s about me now. I can’t afford the abuse, any abuse. My goal is zero percent negativity, but this is pretty much impossible to achieve unless you never leave the house!

Truth is, I’m overwhelmed (underwhelmed?) by some of the adversity I’ve had to deal with on top of cancer. You would think people would know better. But some don’t. Does it still apply to say that whatever doesn’t kill you will make you stronger? Perhaps, but when you’re already dealing with something that has the potential to kill you, any extra adversity is totally unnecessary.

Say good-bye to it in the nicest way possible. And if you can’t do it nicely, it’s okay. You’ve earned the right to be “mean.”

Finding New Joy

Hey, how is your summer going? Mine: Great! In fact, I’m ready to head back out on the road again before I have to return to teaching at the end of the month. Before I do, I wanted to get back to talking about how to live happily and successfully with a chronic illness. Yes, I have one, lung cancer, and yes, I’m still loving life.

In earlier posts I laid out some ground rules to consider that work for me. Below, I’m going to list them again, with links to the previous posts in which I expand on the point:

1) Get the best medical care possible

2) Seek no sympathy

3) Find new ways to do what you love

4) Find new things to love

5) Surround yourself with positivity

6) Don’t let your illness define you

In this post I’ll expand on number four, find new things to love.

I don’t know about you, but the pandemic taught me that I can do things I didn’t ever think I could. Maybe it was because I had more time on my hands than usual. I’m a person that is constantly busy doing the things I have to do, followed by the things I love to do. The other way around if I’m having a really good day! One of my favorite ways to pass my time, namely traveling, was a little tricky when we were all quarantining. So, I took on a new hobby, since I was around town so much more. My new fun was art! And I found out that I’m better at it than I used to think. No, I’m probably not ever going to sell anything that I’ve created, but I’ve decorated my walls and steps and porch with my creations, and I’ve even added a new twist to some of my plants! It’s not important to me whether anyone likes it or not. I’m being fulfilled and I’ve expanded beyond my writing/hiking/traveling mindset! Check out a few of my “projects”:

If you aren’t interested in art, find something else. Maybe you’ve always wanted to learn a language. Maybe you’d like to learn the rules of football so you know what all the hype is about. How about playing an instrument? Learning to cook or bake better? Planting a garden? The trick is not necessarily to “master” something, though you may very well end up doing that. What’s really important is to continue to learn and grow. When we suddenly have an illness that is not likely to get better or go away we tend to think that we might as well just give up, since our lives will probably be over soon. When I was first diagnosed with lung cancer things weren’t looking all that good for me. But to my surprise, I was able to move forward, and due to a few smart moves (see my list above!) I’m still doing just that. If I can get back on track you can too. Truth is, we are lucky to live in a time that is full of medical breakthroughs that help us to live better and longer. Is there something you’ve always wanted to try? Do it! Challenge yourself, and keep challenging yourself!

Last year I shattered my on foot mileage record. 1,850 miles! I averaged five miles a day. That’s a lot of walking! I decided that this year I wouldn’t try to break that record, but would make a new goal for myself: 1,500 miles on foot, 500 miles of biking. I’ve had a bicycle hanging around for a decade, hardly riding it over the past few years, not for lack of wanting, just too busy doing other things. This summer I’ve really been putting myself to it, finally! I’m not likely to reach my goal this year, but that doesn’t mean I’m giving up! I’m just happy to really be doing it instead of talking about it. For me, it’s the excitement of seeing things in a new and different way, finally doing something I’ve been talking about doing for a long time, and having yet another hobby that makes me smile!

Perhaps the greatest thing about learning something new is that your mind is busy and you aren’t dwelling on things that make you sad or angry. That doesn’t mean you’re in denial, but it does mean that you’re putting your best foot forward and coping with the unwanted changes in your life. Try it. I think you’ll like it!