Lung Cancer – I Am Barb Lee

Cancer Builds Character

For those who don’t have cancer, the mere thought of it invading your body is mind boggling, shiver inducing, cringeworthy. You can lose sleep over this shit. I know, I’ve had plenty of sleepless nights. But those were early on in my journey. Three plus years in, I sleep like a baby. Which is not to say that I don’t think about it, that I don’t worry, that I’m not sad that cancer has changed my life in ways that I didn’t expect. Oh yeah, I experience all those things and more. But I’m not angry, and I know I’m a better person than I was before I was diagnosed. Cancer, my friends, builds character.

I’ve been called many things in the past three years, four months, and twelve days. (Yep, I remember the exact date I got the big news.) Warrior, brave, survivor, strong, bitch, sick, Cancer Barbie. I’ve been told that I have to die sometimes. (Imagine.) I’ve read crushing statistics on lung cancer. I’ve been asked time and again if I smoke. (Nope.) I’ve hiked thousands of miles. Traveled thousands more. Buried a sister. Retired from teaching. Seen cancer come and go in my lung, neck, sternum, stomach, pancreas, hips, and flank. Seen “healthy” people pass away before me. Bought a house. Wrote a book about my experience. Learned to like myself again. Learned who really loves me. Learned who my friends are and who aren’t. Learned so much about myself. Learned things that I never wanted to know. Cancer was there the whole time, guiding my way.

In fact, for me, cancer is not going away completely until a cure is discovered. To prove it, my little friend is flaring up in the aforementioned flank, and I will need to have day surgery to get rid of it, once again prompting the kinder of the words: strong, brave, amazing. I don’t feel any of those things. Damn it, I just want to live my life. It just keeps getting interrupted by this disease. I don’t have a choice but to be strong, brave, and amazing. It’s a whole lot better than the alternative. And man, I’m pretty lucky to have choices in the matter. To have a alternative to the alternative. To keep living my life with periodic annoyances. So many people with cancer don’t have these choices.

I’ve consistently and extensively traveled the world, the country, and my local area. Once, when it seemed that I had a lot less to worry about than now, I was in a group of travelers at my school. I still see the people I effortlessly traveled with doing the same thing I used to do with them. Truth is, I still do it too, just with more planning and caution. COVID19 slowed me down a lot more than cancer did. The point being, I can still do what I love. With cancer! But back to the crowd I used to globetrot with. I’m not asked to join anymore. That’s okay, I have a travel companion or two, and I love hitting the road and the sky on my own. I’ve changed too, my priorities are different. I’m not counting countries anymore. I’m going where I really want to go, even if I’ve been there ten times before, even if others are in “exotic” venues and I’m hiking a national park or exploring some abandoned place with cool graffiti. In short, I have nothing in common with most of these people any longer. Being left behind is fine. I’m good. I have experience now that most of them wouldn’t understand or acknowledge or care about. Why would I want to be with them? My entire way of thinking and seeing the world has evolved. I have more respect for the cancer infested me than the earlier me.

If cancer builds character, man, do I have character! And as mentioned above, I’m currently in the throes of gaining more, what with my “side bump” growing again, a literal “thorn in my side.” In some crazy way I’ll be happy to get rid of the little bugger; it’s lodged in my skin on my right flank at the tenth rib, and though it has not been any bother in two years, before then it gave me hell. Buh-bye!

What are the most character building lessons I’ve learned from cancer?

That cancer is a bigger bitch than I am. But only sometimes. That if I give up even for a minute, I’ll die. That I’m extremely lucky in an unlucky situation. That I can’t count on my current family members for anything, unless I want to play their game, stoop to their level, or be subjected to their vitriol. I’ve learned to reach out to friends, as tough as it is for me to ask them for anything. The rest of the time, I’ve learned more than ever to count on my cancer ridden self. I’ve learned that so many things that used to concern me really don’t matter in the big picture of life. I’ve learned to turn my back on situations and people that aren’t worth my time. I know how to pick my battles well now. I’ve truly learned the lessons of survival.

But what I have learned most of all is this: there is no bigger fight than the fight for your life. If you’ve never experienced having your very existence in jeopardy, you wouldn’t truly know what I’m talking about, no matter how much you think you do. Never underestimate the power of impending death to change you or that person that you know is struggling.

Respect, please.

Good-bye, 2022

Happy New Year!

New Year’s used to be my favorite holiday, a pivotal day when everything is seemingly shiny and fresh. New pursuits, new goals, new, new, new! This year the day passed like any other. I had to remind myself on the eve of the new year that it really was the eve of a new year. I don’t know about anyone else, but the so-called “holiday season” didn’t feel like a holiday season this year, in fact it didn’t feel like much of anything. Maybe it’s because of what the past couple months of my life have been like. Whatever the reason, I’m glad it’s gone for another year. Please take down your trees and lights and save on your electric bill.

I got caught up in the Southwest Airlines mess. Instead of flying south to see my niece on the 23rd I received a text at 4:00am telling me to stay in bed because my flight was cancelled, along with 7,000 others. I didn’t make it to South Carolina until Christmas evening. After a couple of good days with my niece (and a big, beautiful turkey feast at 9:00pm on the 25th!) I got dreadfully ill with a sinus infection, made my first out of state visit to an urgent care center, and spent the next three days in bed. A fitting end to a year of many gains that failed to make up for a crushing loss.

No matter how many trips I took or successes I had they can never make up for the loss of my sister Marie. I miss her so badly, wish she could share in the good things that happened to me in 2022. Purchasing my beautiful little house and finally finding domestic peace, resuming international travel, surviving a deadly disease for yet another year; having Marie here to be proud of me would make all the difference, would have made 2022 a different kind of year. No matter what I do now the losses that I’ve dealt with always outweigh the good.

Sorry for being so depressing!

Yes, the traveling was great, I love my home, and I continue to beat the odds of Stage IV Lung Cancer. Perhaps the best thing that happened in 2022 is that my incredible sister Jeanne survived a potentially fatal surgery to remove a huge staghorn kidney stone. Click on the link and read a little about them. Look up some images. They’re disgusting. Jeanne had been fighting infection, sepsis, and constant hospitalizations that only worsened as time went by. Her surgery was a last resort, and she got the best care possible. I’ll just bet Marie had something to do with her success. What a bright spot that I still have her.

I have not formally made any resolutions for 2023. But I have something nagging at me that really is kind of a resolution: to get serious about writing again. Before cancer, all I blabbed about was writing, traveling and writing. Since my diagnosis I’ve managed to pen a book about my journey back to life, and I’ve blogged here all along. Yet I lost the passion and the hunger, and I have not gotten it back to date. It’s time to regain it. I once wrote two extensive books at the same time, and self published seven books in a matter of a few years! Recently I read through my “cancer journey book,” sent it to a close and brilliant friend of mine, and his interest has given me back a glimmer of the ambition I once had. I’m changing my in progress page to reflect my renewed interest in “Destination Life.” Have a look and tell me what you think!

I’m also making lists of publishers of memoires, short stories, and articles on health and wellness, hoping to kickstart my interest again by doing a variety of writing, and maybe even putting some of my old but worthy stuff out there and seeing if anyone bites. So many times I’ve vowed that I would put myself to making a part-time career out of writing. Vows and lists have to be backed up by action. Instead, I play with my phone or watch Hulu. I guess I’ve earned my right to do that. But I feel like I’m cheating myself. No time like the present to light a fire under my own butt, right?

Hey! I just changed the whole appearance of my website, yet another thing that has been on the to-do list for months and only got done now. Yay, me! Could the thirst to write again be just around the corner? My fingers are crossed!

Until then, please enjoy some of my favorite memories from 2022!

I’m Still Standing!

Hey, I thought that it would be a little while between posts, but I didn’t expect for it to be this long! It’s all good. If anyone missed me, thank you. If anyone was concerned that my absence was health-related, thank you also. I’m happy to report that I’ve been “away” for mostly good reasons! Not only have I bought myself some privacy and peace and quiet, but in between real estate demands I took my first trip out of the country with cancer as my sidekick, and enjoyed another holiday with my niece in South Carolina. In between all that, I’ve been moving, a thankless necessity for the most part! The best things about moving are that I’m getting rid of things I don’t need anymore, and I’ll hopefully never have to do it again! At least that’s what I’m shooting for.

As for the traveling, I’m shooting to do that a lot more! But let’s talk about what has kept me from blogging, and just about everything else normal, in the order that it happened. Starting with my new house!

If you’ve never bought real estate before and anyone tells you that it’s fun and a dream come true, don’t believe them. The end result should be a dream fulfilled, but the road to get there is full of disappointment, annoyance, and demanding people who don’t care that you have a life outside of their sphere. If you’re a dummy like me and decide to be nice to a brand new agent and help her get her first sale, you’ll be even more miserable. I can’t even count the times I wanted to ditch the entire transaction and rent for the rest of my life. But I stuck with it and am the proud owner of a beautiful home in a retirement community, a major chip off my Bucket List and something I’ve been planning for some time.

Ten days before my scheduled closing day I flew to Ireland to get away from it all. Yes, the timing was really crazy! But the truth is that I planned the trip way back in March and it just happened to come up in the middle of all the house buying madness! Here I am showing off at Giant’s Causeway. As you can see the weather was quite favorable. The sun was out most days, and if we got rain it was only a passing shower and didn’t ruin any plans. The rainbows were pretty great!

Amongst other things, Ireland is well known for its pubs. I swore that I would not fall into that mold. But guess who spent a lot of time sipping wine in pubs every night? Yeah, you guessed right! And I loved it! Ireland is a triple threat in my book: a beautiful country, with nice people, and great food. What’s not to love?

So then it was back home for more madness. Packing and moving time! I had been in my duplex for nineteen years and had accumulated a lot of stuff. What a job! I also had yet another trip on the schedule, to pup sit my dog children in South Carolina, Jaxson and Chevelle, while my niece visited her in-laws in Florida. This was some much needed rest and relaxation, and I had the good intention of putting out a blog while there, but guess what? WordPress wouldn’t open! I have no clue why. So, no blog. But plenty of dog.

Back home, my move continued. It’s interesting how you can get a taste for something even though it’s grueling, and I got a good taste for gathering boxes, deciding what was getting packed and what was going in the trash, and being ready for the mover, who was so great and helpful. In the end, we got a big job done in about a month, doing three small moves instead of one big one.

Deep sigh.

That wasn’t the end of my challenges. My precious sister Jeanne had kidney surgery and was laid up in Boston for two weeks. She just got home today and I get to see her before Christmas!

As I type this I’m supposed to be landing in Greenville, South Carolina. But my flight was canceled early this morning because of the huge storm blanketing many areas of the country. I’m rescheduled to fly in on Christmas Day, so all has not been lost.

And oh, I retired from teaching yesterday!

Are you dizzy? Yeah, me too! When your head stops spinning have a Merry Christmas and a Happy New Year, and I’ll will too!

Be back soon!

I Am Not Your Warrior

Okay, it’s truth time (again).

Here’s a natural fact: I’m quite adept at pissing people off. Yeah, like everyone else on Earth I’m totally guilty of flipping switches once in a while. But then there are those times when I’m not trying, and my words get twisted into something not intended. Through texts, blogs, and conversations, I’m totally guilty of raising pulses with a single bound. I have the gift of offending. Then again, maybe some folks are just always looking for something wrong? (Always the best way to find it.) Well, I’m about to piss off a whole legion of humanity with the following discussion. So if you’re easily piqued, come back when I’m talking about road trips, or something else less controversial.

Here goes…

Do you know what R-E-A-L-L-Y irks me? When someone with cancer is referred to as a “warrior.” Wait, it’s just women, isn’t it? Men are “fighting it with everything they’ve got,” and we women, well, we’re your warrior. Over and over and over again I see women with cancer being called warriors. “My best friend succumbed to cancer yesterday. She was such a warrior.” Or, “Be a warrior! Kick cancer’s ass!” I can’t tell you how many times this has been said or implied to me in the past nearly three years since my diagnosis. Here’s the kicker, folks. Hold your breath!!

I DON’T WANT TO BE YOUR WARRIOR!!!

Who started this shit anyway???

A tough question to answer, because when I put the term into a search engine I keep coming up with a PBS documentary by that name about a doctor named Judah Folkman who was a cancer researcher in Boston. Just reading a little about Dr. Folkman makes it obvious that it was not he who coined this overused moniker to label any and all women who are unfortunate enough to get the disease. Susan G. Komen seems like a much likelier source. Bless her heart, may she rest in eternal peace, and I hope she was and always will be a shining example of a cancer warrior, if that is what she wanted, if that was her intended legacy.

BUT I STILL DON’T WANT TO BE YOUR WARRIOR.

Back in September of 2019, when I had a weird bump growing out of my sternum and I knew a cancer diagnosis was coming, as unlikely and unfathomable as that seemed, I tried to head off the outpouring of emotions of others by requesting that I receive no sympathy, no questions, no assumptions, no sad faced emojis. I got all that anyway, and more: for some, I’ve become a figurehead of bravery and heroism. For others, a figurehead of pity, puppy dog eyes, and head shakes. I’m so sorry. Aww, you poor thing. But wait, you’re my hero. When all along, the only person I want to be is me. I’ve said this time and again: the struggle to be normal is real, and that struggle is exacerbated by the labels that have been hefted on me. Most are well-meaning. But for heaven’s sake, don’t label me to make yourself feel better about my “condition.” (Heard that before, too.) And don’t label me because you think that I somehow want to be a warrior. I accepted cancer as part of my life a long time ago, because I don’t have a choice. But I don’t accept the need for others to make me feel like an outcast, for better or for worse, because of an illness you wouldn’t even know I have if I didn’t tell you.

Herein lies the catch: even if the label is meant to be somehow complimentary, it still places me in a different sphere than you. Do me a favor, and let me still breathe that rarefied air of those without cancer. And please, for others walking this Earth with this shitty disease, (and have you noticed that there are more of us than ever?) be damn sure they want to be warriors before you adhere the label to them. Here’s a novel idea: ask how someone feels before you assume that they want to be warriors or heroes. Perhaps they just want to be who they used to be before cancer. Or as close to that as they can get.

Meanwhile, I will continue to wield a hiking pole in place of a sword.

Cursed, But Blessed!

I know, I know, it’s been a while since my last post. But if you’ve read enough of them you know that I love my summer road trips, and they keep me pretty busy. Not busy enough, however, to stop me from thinking about things that I’d like to blog about. Here’s one that popped into my mind as I toured California again for nearly three weeks. And if you don’t mind, I’m including snaps from my trip!

I don’t know how many times I’ve declared myself a “lucky girl.” The term just seemed appropriate, and it illustrated that I didn’t take the life I had (and the life that I still have) for granted. A good paying teaching gig, friends to travel the globe with, a few people who really, truly love me.

And then, cancer struck in the autumn of 2019, and just about the worst case scenario I could ask for was mine: Stage IV lung cancer. A curse for the rest of my life, which probably wouldn’t be much longer anyway. After a pretty good run of being a “lucky girl,” my time would wind down and I’d fade away, into the sunset. In like a lion, out like a lamb.

But wait. After seeking top tier medical care, things started to look considerably brighter. Nearly three years later, I’m still here. Not only that, I continue to do what I love to do. So the question looms: am I still a lucky girl? Am I luckier than lucky? Or am I truly cursed?

I think that all apply. Let’s talk about being “cursed” first and get it out of the way. That’s how I like to do things in life: saving the better stuff for last.

Because of the life that I’ve lead, that, by the way, I made for myself through sound decisions and hard work, I’ve been the target of what the world now appropriately calls “haters.” A perfect term! And regardless of how the world coaches you to handle “haters,” there’s only so much vitriol you can take before is starts to stick. When “haters” touch on every aspect of your life, from your body, to the way you travel, even to what you have in your freezer, the hurt sinks in deep. When these individuals not only hurt you, but also the people you love most in the world, the sorrow becomes unbearable. You would hope that the hatred has stopped since I got cancer? It has not, and in some ways it has only gotten worse, since I not only have to deal with this disease, I have to deal with them too. Between cancer and them, I would honestly rather deal with cancer. At least cancer can be controlled for periods of time. The nasty humans that I’m talking about don’t ever stop the abuse and the pain. On top of all this, I’m dealing with the death of the only person I could really talk to about my illness, and about their sickening way of treating me. The past few months have been incredibly trying, and sometimes I’m not sure that I can go on, or that I want to go on, or that I want to keep doing well.

But then…I think of all the things that I’ve done in this life and how there are so many other things I want to experience before I leave this world. And in spite of this disease, I can still do them! Herein lies the blessing. I may have the deadliest cancer at the deadliest stage, but lung cancer has treatment options that other cancers don’t have, treatments that sometimes allow patients to live normal lives for many years. Thus far, I fall into this category. I’ve maintained my lifestyle of hiking, biking, and traveling, something that my oncologist has said has contributed greatly to saving and extending my life.

The past three years have not been easy. Radiation, scans, medication changes, progression, side effects, haters. But I’ve had a lot of fun too. I can’t say that I haven’t. And as always, I’m not seeking sympathy. I’m just putting my feelings out there, trying to write on topics of interest, and hoping that maybe I’m helping someone who has the same issues.

So you see the confusing life that I lead now. Then again, I have lead that same confusing life for decades. Great love, crushing adversity. Loss, and luck. Extreme sadness, extreme joy. Sometimes, all at once.

Some days I wake up feeling like crap and I tell myself, “I can’t do this anymore.” But then I think of the two family members who still love and need me, I think of some of the great friends I have, I think of my sweet bunny Muffin, and my traveling and writing and hiking, and I say, “Okay, I’ll keep trying to get through this.” These days, I’m looking for a fresh start. Have to keep moving forward for that.

Cursed perhaps, but blessed more.

In Memory of Marie

It’s been a while since I posted. I’d like to say that it’s because I was having the time of my life, but that would be as far from the truth as I could get. More accurately, I was remembering and celebrating the life of my beloved sister Marie, who passed suddenly and unexpectedly, but peacefully and without struggle, on May 17, 2022.

I would like to share some pictures of Marie, as well as the eulogy I wrote about her that I read at her service. Please read a little about the life of my eldest sister:

Marie was a complex person. Intensely private, brilliant, and with a photographic memory. But the most important and sometimes overlooked aspect of Marie’s person was the breadth and quality of her heart. Today, it’s cliché to say that our loved one always put others before themselves, but in Marie’s case, this is the absolute truth.

Marie dedicated her professional life and a large portion of her personal life to taking care of others. When those she loved were ill or hurt, she was ill and hurt too. Yet she did her best to find escape and contentment in her books, music, and foreign language studies, and on frequent trips to Boston, the city she loved.

Gaining Marie’s love and trust was a tough thing, but if you got it, it meant something. She would never betray you and would be your staunchest supporter. She had an undying belief in what was right and would carry it out, even when it wasn’t in her favor.

Marie was never a lover of animals or nature until later in life, when she took particular joy in our niece Amanda’s flowers and dog children, as well as photos from my frequent globetrotting. She also became a stellar bunny babysitter while I was away, another example of her willingness to help others, even if it was out of her comfort zone.

I was diagnosed with the deadliest cancer at the deadliest stage two and a half years ago. Marie was with me every step of the way, always ready and waiting a text away for scan and blood test results, even when she couldn’t be right there with me due to aggravations like worldwide pandemics. Thanks to her love, medical miracles, sheer will, and intense love of life, I am still here today. But back in 2019, Marie once said to me, “I don’t know what I’ll do without you.” Now, it’s me that has to live without her, and I don’t know what I’ll do. We took care of each other in life. In many ways, we will take care of each other in death too.

Marie was extremely modest and would not want me to go on and on about her. I can see her sitting sheepish and uncomfortable while I sing her praises. So rather than make her blush, let me finish by speaking directly to her:

Marie, I am sick, lost, and lonely without you, more than you will ever know. But I’m at peace too, knowing that you’re now free from pain, sorrow and worry. Your heart was immense, and like our beloved mother you were too good for this world and how it treated you. I love you and will love you and miss you forever, until we meet again.

SLEEP PEACEFULLY, DEAR SISTER!

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

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.