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.

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.

An Open Love Letter to Utah

Dear Utah,

I remember clearly when we met: the year was 1995, I was with my beloved mom, and we were driving cross country for the second time. The year before we had cut our teeth with a 9,400 miler that inexplicably, did not include a trip through your glory. Yes, there were many other glories, but maybe not quite like yours. This particular trip had a catch: I had just purchased a little bright pink car that we would leave in Southern California once I found someplace to live there. That was my biggest dream leading up to 1995: living in California, and I lived it for five years. But that’s another story for another day, and it’s a long story, for my love affair with California continues. At times, it even competes for my attentions that I usually reserve for you. Believe me, this is not a slight to you, my love. It just IS.

Well, how do you like that! In writing this letter to speak my appreciation, I realize that I have things a bit wrong. 1995 was not the first time I saw you, it was the first time, perhaps, that I REALLY saw you. Mom and me actually drove up to Zion from Vegas in 1993 and stayed a couple of days. Just a little sneak peek at your well known red rock magnificence, and yes, we were impressed. But as I said, 1995 was the deal sealer. As only a road tripper knows, the power to choose where you go and for how long, to have the time to marvel at the color of the rocks in Glen Canyon and wonder how a strip of I-70 can be more beautiful than seventy-five percent of the rest of Planet Earth, will do it. Love at first sight, and forever love at second. And third. And fourth. And…Whew!!

Records indicate that I didn’t make it back to you until 2008 (how can this be?!) and even then, I only flew into Salt Lake City to drive north into other states. Still, I remember that I was pleasantly surprised by random findings along the way.

Listen, I know what I was doing: I was beginning to explore the world outside of this country, and I was completing the tall task of visiting all 50 states in my domestic travels. I also buried Mom, my best friend and greatest traveling partner (sigh) in 2004, so I was cutting my teeth as a solo traveler and really, just trying to figure out who I was.

And then, a big event took place in 2009: I started hiking. That’s when things started to get serious. Still, the slam dunk didn’t happen until 2013, when I spent two and a half weeks hiking all five National Parks in your awe inspiring southern extremities. Zion, Bryce, Capitol Reef, Canyonlands, Arches. While I loved them all (of course!) one emerged as my favorite, and remains thus: Canyonlands. Even as I chip away at hiking ALL the National Parks in the United States, I just can’t keep away from Canyonlands. Doing the same hikes time after time in Canyonlands. Dreaming of Canyonlands. Not enough time in a lifetime to get enough of Canyonlands. Did I mention I love Canyonlands? 😉

For me, the only other place in Utah that comes close to Canyonlands is Glen Canyon. That narrow strip of excitement between Hanksville and Blanding. Yes, that part of Glen Canyon. The Dirty Devil River. Bridge over the Colorado. Hite Overlook. I take the same darn pictures every time. And I don’t care.

Oh, don’t even get me going!

2017, 2018, 2019, 2021, 2022. COVID19 was the only thing that stopped me from being there in 2020. Our reunion in 2021 was unbelievable, because you see, I found out I had cancer in the autumn of 2019, and guess where I was a month earlier? And the thought of never seeing you again was unbearable.

Cancer sucks. Needles, scans, bad news, one step forward, two steps back. But as I became a pro at all of it, I realized that I had a pretty great defense mechanism: memory. Because of memory I didn’t have to think of scans when I was having scans. I could think instead of all the amazing places I’ve had the incredible fortune of exploring. And, you guessed it: I spent a heck of a lot of time in Utah when I was lying in some MRI beast two thousand miles away. How can I ever thank you for that?

I can’t. But I’ll try anyway, by giving you my continued patronage for as long as I have left in this life.

See you soon, my love.

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.

Short Story: Love is For Everyone

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

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

LOVE IS FOR EVERYONE

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

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

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

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

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

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

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

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

              “Another first timer?” Nellie asked Kathy.

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

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

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

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

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

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

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

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

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

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

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

              Nurse Kathy began to set up their infusions.

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

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

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

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

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

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

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

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

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

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

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

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

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.