Dispelling Cancer Myths

Cancer, cancer, cancer, cancer!

Sheesh, you probably say, does this woman think about anything else besides CANCER?

Truth is, I think about A LOT of other things besides cancer. In fact, I’ve hardly thought about cancer at all in the past month because I have been so busy trying to make important changes in my life. But time and time again I come up with more things I want to write about the subject, and let’s be honest, don’t you want to read about life with cancer from someone who actually IS living life with cancer? Instead of a so-called “expert” who writes for one of those cheesy medical sites? Thought so.

This time around I will expand on something I’ve toyed with in other posts: myths about cancer. I have five biggies to cover, fictitious beliefs that I have encountered time and again in the past three years of my “journey.” Here goes!

People get lung cancer from smoking. Therefore, they deserve it. This is totally false, and I know this firsthand. While I smoked long ago, I quit when I was seventeen years old, a full thirty-five years before my diagnosis. Non-smoker lung cancer cases are on the rise from environmental factors such as longtime exposure to radon, which is now the second biggest reason (behind smoking) that people get lung cancer. Neither of these was why I got it. My lung cancer was a genetic alteration. So, asking me smoking related questions is really shitty and ignorant, and if I spit at you remember you asked for it. Don’t do it to anyone, because you really don’t know the reason. And even if the person in question got it from smoking, it’s pretty crappy to assume anyone deserves to have a disease because of a bad habit that is very hard to kick.

All women who get cancer want to be referred to as “warriors.” Nope. Wrong again. I feel like this myth is embedded deep in our culture, since my recent post about this very subject was hardly read or commented on, was even largely ignored by a faithful group of friends who regularly read and applaud my stuff. Yeah, it’s tough for someone to speak the truth and go against the grain of what the general population wants to believe. It’s just so interesting to envision a woman with cancer fighting with all she has and, sometimes, going down in a blaze of glory. Well let me further burst your bubble: there isn’t any glory in dying of cancer. I watched my sister perish from the same curse I’m stuck with now. And I’ll say it again, from my own personal experience: I’m not interested in being your warrior. All I’m interested in is being ME. And I know for sure that I’m not the only cancer survivor who feels this way.

“Big Pharma” is Withholding a Cure for Cancer. This makes me want to scream. Again and again, I notice something really interesting about this myth: the individuals who believe it don’t have cancer. They are experts at something they have never experienced firsthand. I have not heard anyone with cancer make this claim. Because we know that it’s nonsense. “Big Pharma” would make ten times more money curing cancer than they would withholding a cure for cancer. Think about it. I never believed this claim even before I was diagnosed, even from the outside not wanting to see inside. Now, from the inside looking out, I’m in even more disbelief that anyone could be so stupid as to believe it.

Only Unhealthy People Get Cancer. I was one of the healthiest people out there, always took care of myself, was in great shape, ate as well as I could, didn’t and don’t have any bad habits. It would seem that my vigilance didn’t work, but when looked at another way, one could easily say that the reason I’m still alive and kicking is because I was healthy to start with. In fact, when I asked my former oncologist why I “made it” when so many others don’t, he pointed to my lifestyle before cancer as one of the two biggest factors. (The other one is that I have continued to live my life similarly post-diagnosis.) When people claim that they are healthy and won’t get ill because they eat their vegetables and drink their green tea, I just smile, knowing the irony. Living a healthy existence can prepare you for if and when the worst happens to you, but it doesn’t always mean that the worst isn’t going to happen.

Stage IV Cancer is a Death Sentence. Walking around with the knowledge that you have cancer at the deadliest stage is hardly a picnic, but it isn’t necessarily a death sentence anymore. Targeted therapy, immunotherapy, and several other cutting edge treatments are working wonders for patients like yours truly and allowing us to not only live longer and live better, but to turn the tables on cancer, as well as the general perceptions surrounding it. For many of us, the days of suffering more from treatment than from the actual disease are in the past, and every day brings us closer and closer to a cure. I regularly have people tell me that if they didn’t know I have cancer they would never guess, because I look so healthy. I hope to keep it that way for the foreseeable future.

To further illustrate the mythological aspect of the final item, I’m heading to Ireland next week, and I hereby promise to write a nice post (with lots of pictures!) that has nothing to do with cancer when I get back! Until then, I hope you will ponder what is true and what isn’t when you think about this awful disease.

Can I Start Fresh?

By now it’s common knowledge that I have a deadly disease. Almost daily I hear of another person who succumbs to Stage IV Lung Cancer. Almost daily I wonder when it will be my turn. And yet, thanks to modern medicine and my own sheer will to live and even thrive, I’ve survived for three years and am currently feeling pretty good and living my life much the way I always have. Still, questions loom whenever I think too hard about the future, and the biggest one is, do I even have a future to think about?

Many people reading this have no real idea what this feels like, and good for you, I used to be like you. Others will believe that they know what it’s like when they really don’t. Still others will just tell me to “get over it” and live my life, which I am, perhaps better than they are, but which they have no right to say. There will, however, be a handful of folks who will think, “I know exactly what she’s talking about.” They know that the “not knowing” makes planning for the future a weird thing. Suddenly, everything you do has a “twist,” perhaps even an expiration date.

I’m currently in the throes of making some major changes, particularly to my home and work life. In fact, I’m planning to change so much that I’ve been referring to it as a “fresh start,” which then triggers the inevitable inquiry: can I start fresh with a terminal illness? If the answer is “no” I guess that answer doesn’t really matter, because I’m moving ahead anyway! And if the answer is “yes” there is always that nagging feeling that I’ll end up really happy in my new life, then the rug will be pulled out from beneath me (again) by cancer and it will be all for nothing. Or I’ll die happy? Worse could happen; I could die miserable. But the point is that I don’t want to make all sorts of improvements only to end up on my last leg. Nor do I want to die with regrets. I have few if any as of now. Which only leads to another bit of confusion, because if I don’t move forward on my dreams and goals and I end up living for many more years (which isn’t impossible) it will be time wasted. Sounds like a recipe for regret to me. Who needs that?

Do you see my dilemma?

Admittedly, I’m not as ambitious as I once was. Is that all because of cancer? I can’t really answer that for certain. Perhaps it is, but I think that the changes in the world that COVID19 brought about have to be considered, and well, I’m not as young and idealistic that I used to be. Last post I revealed my personal Bucket List. Much of it is riddled with travel goals, but even those have changed, have become more focused. At one time I planned to get a PhD, travel the globe for two or three years nonstop, own a Victorian home, be a millionaire, write a bestselling novel. And a lot of other stuff that has long since disappeared from thought. Maybe I never really wanted those things, or maybe they were unrealistic. Now, I have six things on my goals list and just about all of them are right in front of me. In fact, one of them was basically offered to me today unexpectedly, once again proving that you just never know what is going to come your way, good, bad, or ugly. So I guess I will have to raise the bar a little. Or maybe, like John Lennon once said, I’m just watching the wheels go ’round and ’round. I’m damn tired, and maybe it’s just time to have a break. Is that giving up? No, I don’t think so. I think it’s just a fresh start as a me that is a little older and wiser than the one before.

A few months ago I lost my dear sister Marie, leaving me with just a couple of people that I love and trust and whom truly love and trust me. My mother, who loved only one man her whole life (my dad!) once told me, “He gave me enough love to last me the rest of my life.” I’ll never forget her words, and I remember thinking, “I hope I feel that way someday.” Now, I believe I do. Not the same kind of love that Mom was talking about, but love from her and my dad, my sister Marie, my sister Jeanne, my niece Amanda. Why do I bring this up? Because my fresh start ties in with this. I’m not searching any longer, I’m no longer interested in being in the line of anyone’s fire, I won’t be subjected to conditional love. I’ve received enough love, and can live with what I still get. I’m okay, and I’ll take care of the people who take care of me.

Can I make a fresh start? I already am. Only time, if it is on my side, will tell how well I do.

It’s Bucket List Time!

Having a Bucket List is pretty much a given thing for most people, but did you ever think about the right time to start chipping away at it? I’ve spent so much time traveling and hiking and doing other things that I love to do that I feel like I’ve been barreling through my Bucket List for quite a while. However, less than a year ago I really started to narrow things down and decide what it is I still must do. Because…

*I’m not getting any younger. Are you?

*I have this crappy disease to contend with now.

*COVID19 changed the world for me and a lot of other people.

For all those reasons and more, I find that there are a lot of things I don’t want to do any longer, so I’m happy that I did them before now. For example: I have no real desire to sit on an airplane for twenty hours to get somewhere. (Though, given a few items on my list, I may find myself doing that at least a time or two more!) There are also things that I want to start doing, like experiencing cruises, which I have hardly done at all. I took these wishes into consideration when creating my list. My choices are truly a mix of old favorites and new interests.

Without further ado, let me share my personal Bucket List, including my progress at getting the items done. I eliminated a few this year!

Experiences

* Cruise to Antarctica. Yeah, this is top of the list, baby! I really wanted to see my seventh continent early in 2023. I’m ready. But wait! The two cruises that I narrowed my adventure down to are booked solid. No joke! Who knew that a legion of people around the world would be plunking down between $10,000 and $50,000 to board a ship for two weeks or more to see penguins and seals? Not me! But you can bet I’ll be first in line in 2024!

* Greenland Cruise. One of my travel friends and I have been talking about this one for a couple of years now, and we came oh so close to booking it for next July. Then…she backed out. I’m crushed. But I will find a way!

*Alaska Cruise. I’ve road tripped the Last Frontier twice, but have never been to southern Alaska, where there are no roads. Must get there. Not sure when this will happen, but this one will definitely be easier to pull off than the two above. Glacier Bay National Park will be part of the package. More on why below!

*Hiking in St. John, U.S. Virgin Islands. Over and over again I see St. John touted as an amazing place to hike, always as sure sign that I’ll be interested. Not sure why I haven’t jumped on this one yet.

*Australian Outback. Uh-oh, twenty hour flight! But I know it will be worth it. I’ve been Down Under once already and must go back before I leave this world.

*See the Pigs in the Bahamas. I kid you not! I’ll spend the whole trip on the beach with the pigs then come home happy. Probably another cruise. Do you see a pattern here?

*Hiking in Hawaii. Oh, and I just figured out how to get to American Samoa, so add that to this particular adventure.

Countries

*Costa Rica. I was scheduled to go in December of 2021 when COVID19 was still a hot topic. I couldn’t risk getting stuck in a foreign country, so cancelled. No plans to reschedule, but not giving up.

*Brazil. I never wanted to go here until I saw some pictures of Rio on Instagram, then it shot to the top of the list. And I want to see that big waterfall while there too. Likely to be a part of my Antarctic adventure in 2024.

*Return to Portugal. This one tugs at my heart strings, because I had to cancel my third trip to one of my favorite countries due to cancer. But there is hope…

*Switzerland. Woo-hoo! I found this really cool rail trip online and put a down payment on it for June. Let’s roll!

* Return to England. Did you ever go somewhere and not do something while there, then it sticks in your craw for, like, twenty years? Me too! Here’s the thorn in my side: In 2002 I went to London, Liverpool, and Canterbury. And yes, the journey to Liverpool was for the obvious reasons: Fangirling before the word was even part of the English vernacular. I did everything I wanted to do with regard to my beloved Beatles…except one thing: I didn’t go to the cemetery where Eleanor Rigby is buried. Can such a thing bother you for twenty years? Yes, it can. And it has. So that will be taken care of, put to rest once and for all. And just for kicks I added four days in Portugal to the end of the trip to see how much more it would cost. Turned out to be so insignificant that I’ll do it. This will all be my retirement present to myself. I intended it to be Antarctica, but this will more than suffice.

More…

*National Park Hiking. I started working on the goal to hike them all a decade or more ago, after I had already visited many of them. The 2022 count is thirty-eight down, twenty-five to go. Many of the locations I have left are remote and tough to get to, but I’m not giving up. Every summer I hike more. In fact, I knocked off a load this past summer.

*Climb The Edge in New York City. Have you heard about this? Another excuse to go to my precious Big Apple.

*Concerts. Paul McCartney, Foo Fighters, Elton John, Harry Styles, and Ed Sheeran.

*Buy My Own Little Piece of the World in a 55+ Community. I came of age not so long ago. Working on it.

*Buy and Road Trip in a Small RV. Not working on this one yet, but once other things are settled I will.

*Last but not least, I want to spend as much time as possible with my beautiful niece in South Carolina and my amazing sister Jeanne nearby.

Recent Progress

I knocked off five national parks this summer, and also saw Sir Paul McCartney and Elton John in concert. Chipping away.

Please enjoy photos from some of my recent Bucket List events!

What’s on your list?

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.

No Fake News: A Week with COVID19

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

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

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

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

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

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

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

No such luck.

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

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

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

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

And I never turn down a good prayer.

Here I Come Again

I don’t know about you, but 2022 hasn’t exactly been a memorable year for me thus far. I’ve just dealt with six months of intense back pain dating back to September 2021, in addition to stage IV lung cancer dating back to October 2019. Yay, me.

But guess what? I finally got what I needed. Did my six weeks of physical therapy, (well, eight!) then my insurance company ponied up for my steroid injection. As I type, it has been a handful of days, and I definitely feel a difference. I’m hoping that as the next week or two passes, I’ll feel even better. Just as important as the way my body feels, is the way my mind feels: I finally have a stepping stone for turning my life around. Again. How many times will I do this? How many times will I be allowed to do this before my clock stops ticking? Somehow, someway, I don’t think I’m done. I think I can move forward. As some people like to say, “You got this.”

What a sigh of relief.

Funny/not funny what pain does to you. I can almost handle the cancer, because the odd truth is that my life continued much as it did before my diagnosis once I was on the right treatment plan. But this back stuff? It has tormented me beyond anything physical I’ve ever dealt with, has delivered a crushing blow. Add sucky New England weather to the mix and it’s a true recipe for disaster. I have not been to my favorite local hiking haunt in two months! This is horrific news! From September until November I continued my exploration of the trails around Quabbin Reservoir even though my back ached, and it kept me sane. Since the snow and ice shut me out of much of my outdoor activity I’ve been yearning to get back outside with the animals and the trees, to get my feet moving, take some pictures, feel like I’m alive again. Here I wait (impatiently) for a stretch of weather that’s warm enough to melt some of the ice and give me a Saturday afternoon to get back out there and forget about stuff for a while.

Don’t get me wrong, I’ve kept myself busy with my “indoor” loves: writing my latest book, posting to this here blog, doing my special brand of artwork, reading, working on photo albums, continuing my studies of the Polish language. I’m not giving any of that up! I just have to get back to walking off those steps and miles that mean so much to me and keep me grounded. You really don’t know how very much something means to you until you can’t do it.

Know what else I need to do? Plan travel. I’m heading to South Carolina again in a couple of weeks to see my beloved niece. I need more on the calendar after that. I’ve always kept myself going by making plans. I’m seeing Southern Utah, Cape Cod, California, Oregon, and Portugal in the not so distant future. Maybe later in the year I’ll reschedule my canceled trip to Costa Rica, but COVID19 has to look a lot better before I even think about leaving the country. As long as I go somewhere, I’ll be okay. The idea of getting back to globe trotting and country hopping is always a possibility, but is not the necessity that it used to be. I’ve done a lot of crazy stuff, and I’ll do plenty more, but safety is first and doing what appeals to me most runs a close second.

Right now, my number one goal is to drive twenty miles to the north and walk a flat trail down to the edge of the largest inland body of water in Massachusetts, like I’ve done hundreds of times before. Having the sun shining would be a big plus. Melting snow, even better. And silence. Lord, give me silence! Five miles of silence. I have not done a five miler in several weeks. Several weeks too long.

Even though my feet aren’t quite moving yet again, just being able to wrap my mind around the possibility of resuming my active life is a miracle. Maybe 2022 will have some happy memories after all?

Hey, guess what? I got my airfare to Albuquerque, my chosen gateway to Southern Utah, last night. Booked my hotel on Cape Cod earlier in the week. The forecast for this Saturday is for sun and 50 degrees. I’m adding hiking to that forecast. It can’t come soon enough.

Yeah, I got this.

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