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?

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.

About Traveling

Hey, this will be my last post for a few weeks. Vacation time is nearly here, and I’m heading back out on the road again. Which makes this the perfect time to write about one of my favorite subjects, for the first time in a while: Traveling!

I always find it so weird when people make it sound like there is some “right” way to travel. That you, as the subject, have to travel in some certain way to be a “traveler” and not a “tourist.” That there is some time frame that you have to spend in a place to make it worth your while and to satisfy others that you successfully “saw” something or somewhere. That one person’s way of traveling is superior to another person’s way of traveling. Last thing I knew, travel was supposed to be fun, like an ice cream sundae, with a learning experience on top, like a shiny red cherry, if you so choose to have one. Then again, maybe a trip is simply an escape from the rat race.

Social media is full of “influencers” who will have you believe that their way of traveling is not only better than yours, but that it’s easy and they’ll show you how to be like them, for a price. You can trot the globe while taking odd jobs like bartending and teaching English as a Second Language. Thanks, I got over working in bars when I was twenty-five, and I teach people’s kids every day and love sending them home at 2:15pm, no questions asked. I like my good paying job with paid vacations. I’d pay to see pictures of those “influencers” doing one of their real jobs in between the glossy shots from the pristine mountain top in New Zealand and the beach in Mexico. I want to see the “influencer” mixing a White Russian and looking picture perfect. Really.

Thank goodness for the unfollow button! I recently had to use it on one of the better known globe trotters that I had been following for a couple of years, because she was being pretty insulting to someone else’s way of life. What the heck happened to live and let live?

The other thought that I don’t agree with is that in order to travel in a worthwhile way you have to go to a foreign country. Make no mistake, I love exploring places outside the United States. I’ve done more than my fair share. But in a pinch, and let’s face it, we’ve been in quite a pinch since March of 2020, I’d take a road trip to the American West above all other traveling. I’ve ticked off forty plus countries thus far and have every intention of ticking off more in my own fashion once I deem it safe for me, but give me that road trip every time. It should come as no surprise that I’m heading to the American West this next trip too! I can’t WAIT!!

Here’s a secret about me that makes me different than the garden variety social media travel giant: I love coming home and I love being home, too. The pandemic gave me an excuse to stick close to home and explore my own backyard more. I always said that “someday” I’d do that more and, well, I didn’t expect cancer and COVID19 to give me the opportunity, but I’ve had a heck of a good time! I’ve always scoured New England in between bigger trips, but not like I have in the past two years. In my favorite movie of all time, Dorothy Gale went to great lengths to find out that her heart was in her own backyard. My heart is still and always will be in the American West, but New England is pretty cool too.

Before my cancer diagnosis I spent the better part of twenty years earning my keep as a special education teacher and traveling on school vacations. Maybe taking an extra day or two on either side to make my time away longer, or even escaping on a long weekend. Now that I haven’t done it for a couple of years I realize that it was exactly the way I wanted to travel. Make my money, pay for a trip, enjoy where I was without having to worry about work, and come home to earn money for more fun. After my diagnosis and through the COVID19 storm I continued my exploration as best as I could. Slowly, I’m getting my travel life back on track, though I’ve decided I want to do things and see places that I didn’t take the time to do and see before. Cruises and islands are of high interest, while twenty hour flights to the other side of the world are not really a priority. Oh, and more road trips, of course! Always more road trips!

In short, the Bucket List is officially made. It was time.

And so, I continue to explore as I see fit, and I am unapologetic.

Travel and let travel.

Who’s to Blame?

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

The subject? Blame.

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

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

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

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

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

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

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

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

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.

The Real Meaning of MY Christmas

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

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

So I cancelled.

Then, a golden opportunity arose.

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

The table was indeed set for that golden opportunity.

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

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

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

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

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

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

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

Stop Calling me “Sick”

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

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

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

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

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

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

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

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

Sigh.

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

Please…STOP.

Rediscovering You

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

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

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

Get the best medical care possible

Seek no sympathy

Find new ways to do what you love

Find new things to love

Surround yourself with positivity

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

Don’t let your illness define you

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

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

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

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