Category: Cancer

Apparently, I’m A Quitter

What a weird week I had last week. Ups and downs and ins and outs and upside downs. I guess that’s every week for most people, and for me too, but last week everything was even more pronounced than usual. It finally ended with a colleague referring to me as a “quitter.” And this is a colleague who knows enough about me to know that this is a pretty ridiculous claim. So here I am to refute it.

Before I can do that I have to explain a few things.

First of all, let’s agree that conflicts usually begin over really stupid things. I know this firsthand, because I’m estranged from a couple of members of my family due to of a lot of nonsense that could have been avoided, but eventually snowballed into situations that ended up hurting a lot of beautiful and decent individuals. We’ve all read that wars begin over small disagreements between parties. That dictators end up hating certain groups because of avoidable disputes. That grudges over miniscule differences can last a lifetime. What I’m going to relate here is similar. Here goes.

The colleague in question asked me to assist her with taking some decorations off a large piece of paper on her wall, with a plan that we would reuse them. Everything was taped, and when I tried to remove something the piece of background paper ripped about two inches. She FREAKED OUT on me, then quickly tried to justify why she did. My response: “It’s PAPER. I’ll tape it. I’ll get another piece. It’s not someone’s LIFE.” We got around it, but while I was pulling more tape off the same paper it started to rip again and she FREAKED OUT a second time. At this point I told her to do it herself. And these words fell from her condescending lips: “You quit at everything!” Students, taking their final, were staring at us. How embarrassing!

For a little bit of background: this same person has repeatedly shushed me in front of students when I try to respond to conversations that she starts, and is always quick to one-up me whenever I reveal some small victory in my sometimes challenging and multi-faceted life. Some of the things I’ve heard her say to students are questionable, at best. A lot of unnecessary comments that are clearly not well thought out are spoken. She is not a bad person by any means, just very sheltered, from what I have gathered. Like a lot of coworkers I’ve encountered, she has some major power issues. In spite of all this, our working relationship has been pretty good. Hard to believe, right?

Here’s the kicker: the day before this incident we had gone out to eat with a mutual friend, and had a great time. You’d think it would make a difference? Apparently not.

Although I woke up this morning just about “over it” and ready to move on without her in my sphere, I still think I should defend myself against her utter misstep. I’ll try not to be as self-absorbed as my buddy.

WHY I’M NOT A QUITTER:

You know this is coming. Check the statistics on Stage IV Lung Cancer. I’m not going to post a link, because I don’t look at them anymore. I’m over them. They aren’t me. But they could have been me. Only, I didn’t quit. Point made.

I’ve lost more people who truly loved me than I have left in this world. And yet, I still find joy in life. I could have quit, but chose not to.

I never had the comfort of having someone pay for my education. The only reason I got a master’s degree is because I tapped every resource I could find, including my own bank account. Furthermore, I worked full time jobs the entire time. I may have been exhausted, but I never quit.

My traveling life has, for the most part, been self-funded. Been doing this stuff for nearly 40 years, including three and a half of them with cancer. This sucky disease could have stopped me from doing something I love, but I didn’t quit.

Another thing I didn’t quit at is hiking. I’ve hiked thousands of miles since my diagnosis. In fact, I log more on foot miles in a day, a week, a month, and a year than most humans.

I could go on and on and on, but I won’t, because here’s an alternate thought.

My dear colleague might just have a point. I long ago quit losing my shit over pieces of ripped paper, over “spilt milk.” I’ve quit letting power-hungry colleagues and family members effect my life in any major way. I’ve learned to quit letting cancer decide how I live, what I live for, how long I live. I’ve quit having to “win” every battle and aim to conquer only the really important ones.

Perhaps I am a quitter after all.

The Latest Glitch in the Plan

I’m heading to my beloved Southern Utah again soon, and I wanted to get this out into the universe before I get lost in fantasy land. The following update on my health doesn’t quite go with traveling and enjoying life, but there are some things in this world you just can’t explain. I heard that in a song once. Here’s today’s challenge: name that song without the help of dear old Google. I’ll just bet that no one remembers it!

Meanwhile, here’s my latest challenge: I recently had a tumor removed. For the record, my cancer did not “come back,” though that’s the word on the street. If the rumormongers were paying attention, they would know that my cancer never went anywhere, it’s just too small to see. What really happened is that one of my known tumors grew large enough to appear on a scan again. So there you have it. The tumor was one that was already there, so it’s not even “new cancer.” It’s a lesion that started growing again, one that was originally discovered in my second round of metastatic lung cancer.

The question that likely looms in your mind is: how can she be going on vacation after surgery and with Stage IV cancer? That’s what most people don’t understand, and the ridiculous posts that those who’ve never had cancer spread around social media just perpetuate the myth that the disease is the same for everyone.

It’s not. I repeat, it’s not.

But let’s get back to my surgery.

Way back in November of 2020, I found a really odd bump growing on my back. That bump turned out to be an outward sign of my well-managed cancer taking control again. Things were pretty messy when I had my next scan, and life wasn’t looking too hopeful. But I started a new medication and the cancer shrunk away to almost nothing. That included the bump, which had grown so big in early 2021 that it would spurt blood whenever something rubbed up against it. Believe me, there’s nothing much uglier than a cancerous tumor growing out of your body. I think of that line from Simon & Garfunkel’s “Sound of Silence” often, likening silence to a cancer growth. Take it from someone who knows firsthand, there isn’t anything quiet about a cancerous tumor. Cancer makes your whole life loud whether you want it to or not. But if you’re really lucky, like me, you can ease the noise. Unfortunately, what you have no control over is what others assume, then trumpet to the world without even asking you what’s really going on.

I kept my eye on the bump after all that shrinkage. I could still feel it in my right flank, though it was tiny. For two years it was under complete control.

Fast forward to three months ago. I became concerned about Mr. Bump. It sure seemed to be growing, albeit slowly. My February CT scan confirmed it, as much as I wanted to tell myself it wasn’t true. The other areas of metastasis (yeah, there are several) continued to be under control. I was offered localized surgery to remove the cancer. This option allows me to continue on the same medication I’ve been on since January of 2021. Anyone who knows about staying alive on cancer drugs knows that the longer you can make it on a drug, the better. My type of cancer is so rare that there are only a limited number of medications that I can take before my luck runs out. And believe me, I’m going to ride the wave of these miracle drugs for as long as I can!

I can still walk and hike and think and travel and take road trips and ride a bike and drink an occasional glass of wine and live a normal life. I’m very thankful that I had the option of surgery, and really, it wasn’t so bad. Yeah, I know you’re horrified, but for me, another scar is nothing compared to the alternative. I have a lot of stuff still to do in this lifetime!

Now, I have to wait until May to get scans and see if I’m back to the coveted NED (no evidence of disease), a hard won designation that I achieved after a year on this medication. Right now, I guess that cancer is a little ahead of me again in the fight for my right to live another day, another month, another year. But I’m not letting that stop me from making every moment count. I’ve tried not to miss a beat. I just wish I could take a bath again! That has been the biggest inconvenience.

Life rolls on!

I’ve officially been at this crazy game for three and a half years!

If you’re having a bad day and need some inspiration, here are a few pictures from my adventures since surgery. My next post will be about Southern Utah!!

Breaking news: After I finished writing this blog I woke up bleeding on a Sunday morning. My wound opened up during the night! The fun continues…

Cancer Builds Character

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

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

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

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

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

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

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

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

Respect, please.

Marie, I Get It

Did you ever lose someone in your life and realize that you didn’t really understand them while they were here? I lost my eldest sister Marie in May of 2022, and I understand her better and better every day that goes by. I wish I could talk to her and tell her, “I get it now. I know how you felt.” Of course, I do talk to her, but it isn’t like having her sitting across from me at the kitchen table, something that happened on a weekly basis the last year of her life. I’m so thankful that I had that time with her, even though our talks weren’t always happy or enlightening. Sometimes, it could be tough to get her to open up. But when she did, so much was revealed.

Our conversations would inevitably wind up on our family. Herein lies the biggest hurt of Marie’s life, one that I totally get now. When she was alive I always had her to fall back on, so the backlash from the remaining members of our immediate family didn’t matter as much to me. I tried to ease her pain by reminding her that she and I had each other and our sister Jeanne, and nothing else was all that important. We had to leave the past behind and count on one another. Now that she’s gone, the loneliness of not having anyone to talk to about the inner workings of our shattered brood is deep, and likewise, not having someone of my own flesh and blood that I can trust without question is disheartening. Though we didn’t always agree, Marie was the only one in my family that really kept on top of my medical concerns, and dealt with the ups and downs of our sister Jeanne, who is disabled and has nonstop health issues. Other than our parents, I have likely never met anyone that could be counted on unconditionally to keep her mouth shut and be a support system, even when the chips were down, like Marie could be. And in the final years of Marie’s life, the chips were usually down. I get it why she wanted to fade away, and did.

Don’t take this post the wrong way. I’m not suicidal. I’m not looking to check out, or to elicit sympathy. But my heart has been broken so many times by people I love and who are supposed to love me that I’ve lost count and I just keep moving further away from them. Marie’s heartbreak was tenfold to mine. So I have that to live with. I’m shattered for my parents too, who were the best people in the world, and deserve a better legacy than the one still playing out. We should have all been success stories. They gave us everything. We have no excuses. Yet we are unfixable at this point. There isn’t even a “we” anymore.

I’m also not jealous of anyone’s family. I don’t want yours. I want mine, the way it used to be before some poor examples of human beings were invited in and came between us. I want family members that, instead of celebrating those who trample them, celebrate those who celebrate them. But I know that this is impossible; the damage has already been done.

So, what is there to do?

Marie was never able to build a circle of friends outside of our family, and I haven’t done so well either. We were both born introverts. And with six girls, we didn’t so much need friends, because we had each other. I realized long ago, when we started to crumble, that a lot of my failure to have long-term friendships is because my sisters were my best friends. Now that they have either moved on to the next life, or have stayed stuck in place in this life and I’ve moved on, I’m at a terrible loss. Instead, for years I’ve been removing myself from situations that simply hurt too much, and counting on friends, and traveling, and writing, to get me through. Marie couldn’t find ways to cope the way I have. But she has found the peace she wished for. Whenever I miss her too much I have to remind myself of that.

I want to find mine while I’m still alive.

New family wanted. Apply here.

Good-bye, 2022

Happy New Year!

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

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

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

Sorry for being so depressing!

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

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

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

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

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

I’m Still Standing!

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

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

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

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

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

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

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

Deep sigh.

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

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

And oh, I retired from teaching yesterday!

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

Be back soon!

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.

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.

Fangirling!

Hey, is fangirling a word? Well, if it isn’t, it is now!

I’m not normally a gushy, shivering mess when it comes to celebrities. But on my current road trip (I’m starting this post from Cleveland, Ohio, almost at the end of my drive home,) the past two days have been spent paying homage to some of my all-time favorites, namely James Dean and The Beatles!

When you live with a chronic disease like I do, you always have to wonder if you’ll get another chance to do what you love. Then again, life isn’t guaranteed for anyone, so we all might as well be doing what we want when we can! Which is how I ended up in Fairmount, Indiana, again after a twenty-eight year hiatus, and at the Rock and Roll Hall of Fame at the precise time that the “Get Back to Let It Be” exhibit is running…

For whatever crazy reason, on this year’s trip I seem to be revisiting places that my beautiful mom and I first saw in 1994, on our very first cross country road trip, which spanned 9,400 miles, seven weeks, and twenty-four states. You know, that trip that is supposed to be “once in a lifetime” but turns into a yearly occurrence? (Smile.) That was the first time I was in Fairmount, Indiana. James Dean was actually born in the small city of Marion, Indiana, a few miles north, but spent most of his childhood and teenage years in Fairmount. When we first arrived in town I was, quite frankly, obsessed with Jimmy, even though he died in his Porsche Spyder eleven full years before I was born! I may have calmed down and grown up a little since then, but I’m still a big fan.

Much of the same can be said for my “thing” for The Beatles; I totally missed the Ed Sullivan experience by nearly three years, and when my dearly departed sister Marie saw them at Suffolk Downs racetrack on August 18, 1966, I was a few months from departing the womb. But I crave my Beatles lore almost as much as I do their music; seriously, what could be more interesting than being a Beatle?! From what I can recall, my first real brush with my four cherished boys was when I asked Marie to buy me Sgt. Pepper’s Lonely Hearts Club Band for one of my birthdays in my teen years. And yes, I still have it! Side note: I’ve been to Liverpool (2002) and am hoping to go back later this year, have walked the “zebra crossing” and written on the wall in front of Abbey Road Studios in London twice, have gone to the Imagine memorial in Central Park, New York City, several times. Just recently I saw Sir Paul in concert at Fenway Park in Boston. Another one off the Bucket List, and another piece of the homage completed!

Getting to Fairmount again meant adding an extra hundred miles of driving to my day, so I had my priorities set. The town is so small that it isn’t such a hard thing to drive the whole length of it, which I had to do anyway, as the items on my list were, naturally, on opposite ends. I would have liked to spend time in the James Dean Gallery and the Fairmount Historical Society (filled, of course, with more Dean memorabilia!) like I did in ’94, but what was most important to me is probably what most super fans would want to see: the grave and his boyhood home, which are very close together. I remember Park Cemetery being quite small the first time I was there, and the grave being very easy to find. Now, the place is huge and signs have to point the way or else no one would ever find it. Dean’s boyhood home has also grown considerably in the past twenty-eight years; his cousin Marcus Winslow, who was just a boy when Jimmy was making his way in Hollywood, now runs a full-fledged farm, and it is a beautiful landscape of rolling green fields and white picket fences. Marcus was out on the riding lawn mower the day I was around, and I’m happy to say that he waved to me. My brush with greatness was complete!

Interestingly, “Get Back to Let It Be” was only a small part of director Peter Jackson’s extensive documentary of the Fab Four and was skillfully inserted into the Level O exhibits of the Rock and Roll Hall of Fame. I was concerned that I wouldn’t have enough time to see the best of the hall, but because of the location of the exhibit I was able to take in most of the rest of the floor on the way to The Beatles. “Get Back to Let It Be” consisted of long-shelved excerpts of the tapes made of the recording sessions for the Let It Be album, including the famous “concert on the roof,” as well as instruments used, and other memorabilia. Because it was compact, it wasn’t overwhelming to see the entire thing, and to see it well. I was very satisfied with the entire floor!

Pilgrimages have always been included in my travels. Part of the fun is finding what is sometimes a needled in a haystack. Yeah, I think it’s about time to book that return trip to Liverpool!

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.