Rediscovering You

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

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

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

Get the best medical care possible

Seek no sympathy

Find new ways to do what you love

Find new things to love

Surround yourself with positivity

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

Don’t let your illness define you

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

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

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

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

Positively Positivity

Whew! I was really hoping to be back here long before now, but guess what? I recently returned to face to face teaching, with students in the same room for the first time in over a year. After working remotely followed by an accommodation due to a serious underlying illness (advanced lung cancer…yikes!) for the entire 2020-2021 school year, I’m in front of the kids again for real. Masks are required for everyone, so it isn’t quite the same, but I have to admit that it’s been a mostly positive experience for me to be back in the routine I was in for many years before my cancer diagnosis. In fact, I feel quite normal, and can even sometimes forget that I have a deadly disease. Add last week’s great scans to that equation and it makes for some happy times. But heck, what a struggle to get here, and believe me, I’d be a fool to think that it’s going to last. Which doesn’t mean I’m not going to enjoy the break until the next big cancer event, and that I won’t hope and pray that I have lots of time before that happens.

How did I get to this more comfortable place?

I got (and continue to get) the best medical care possible.

I asked for no sympathy.

I found new ways to do what I love.

I found new things to love.

I surrounded myself with positivity.

I didn’t (and don’t) let my illness define me.

Please click the links above to read previous posts on how I live successfully with a chronic illness that initially spun my world around and still continues to at the drop of a hat.

In this post, I will discuss point number five, surround yourself with positivity

Let me put it right out there: you don’t need people throwing around their own special brand of negativity when you’re already dealing with more heartache than most humans can handle. Do you know what it’s like to have a needle in your arm and lie in a tight, noisy machine while it scans your brain? Then to get out of that machine and get in a different one to scan most of the rest of your body? How about radiation? Ever had it? Or, think about what it might be like when you just want to live your life but you can’t because you have to do things to save your life. Now, add a negative person or two to that and aren’t you feeling extra super sucky? Yeah, I’ve been there, done that.

So, what do you do? The solution is simple to say, difficult to accomplish. Complicated, because the negative individual is oftentimes someone we love and we think we have to be “nice” and let that person chip away at us when our health woes are already doing that, because to get rid of them is “mean” and we just don’t dare cross that line. Listen, there’s no definitive proof in medicine that stress and unhappiness cause diseases and illnesses to fester inside of us. But last summer when I was in Boston for three weeks receiving radiation I was under siege, being called every ugly thing in the world by someone who claims to love me, and the emotional pain I was feeling was palpable. This was on top of being off my cancer medication and limping around Boston five days a week to get my treatments, being away from home, being masked several hours a day in heat and humidity, and wondering if the radiation was even going to work to save my life.

I know now that the radiation did its job pretty well, but five months later I had metastasis in my lower body, and guess what? The abuse continued. When I was sitting around a medical facility alone because of COVID19, too far from home, and fearing for my life again after a pretty good run at cancer, the abuse didn’t stop. I still remember that cold December night very well. I had just turned fifty-four. And I certainly wasn’t getting what I wanted for my birthday.

Alas, I have gained control of this situation since then. I was “mean.” I wasn’t “nice.” I had to avoid this hurt and pain at all costs, and I still do. I’m not much on sidestepping problems, but then I never had cancer to deal with. I danced around this blemish in my life and a few others that threatened to bring me to the ground. Sorry folks, it’s about me now. I can’t afford the abuse, any abuse. My goal is zero percent negativity, but this is pretty much impossible to achieve unless you never leave the house!

Truth is, I’m overwhelmed (underwhelmed?) by some of the adversity I’ve had to deal with on top of cancer. You would think people would know better. But some don’t. Does it still apply to say that whatever doesn’t kill you will make you stronger? Perhaps, but when you’re already dealing with something that has the potential to kill you, any extra adversity is totally unnecessary.

Say good-bye to it in the nicest way possible. And if you can’t do it nicely, it’s okay. You’ve earned the right to be “mean.”

Chronic Adventuress with a Chronic Illness

Yeah, I guess it’s time for me to face the facts: I’m going to be a sickie for the rest of my life. Believe me, even if I try to forget about it, there’s always someone there to remind me that I could be just as easily knocking on death’s door as I could be hiking mountains and enjoying life. Whoa, wait, did I just say enjoying life? With a chronic illness? Yes, truth of truths is that no matter what stage IV cancer has taken away from me, there’s still more that it hasn’t taken away from me. The number one thing I still have is my happiness. We’re talking real, deep happiness, not the material kind that a lot of people try to substitute for the genuine product. In fact, I find that more than ever, little things make me smile. A lot of things make me smile. And they make me smile a lot! Understand?

Since I was diagnosed in 2019, I’ve tossed around ways to help others who are struggling with illness. I touched on being “the new face of surviving cancer,” and wrote the story of my first year with the disease. (It’s in a drawer now, unpublished!) I’ve ridden the “Who am I now?” wave the whole time. After a recurrence soured my survival skills for a few months, I’m back in a comfortable place full of hope and future plans and feeling like I have something to offer others living with chronic illnesses.

Before I start sharing my thoughts, let me first clarify a few things. Most importantly, my chronic illness is lung cancer, which, if I had it ten years ago, would have undoubtedly killed me. I am extremely fortunate that my illness can be controlled with medication. This likely sounds far fetched, but it really isn’t. Read here for more information about how we can now treat some individuals with lung cancer. Also, my disease has nothing to do with smoking, so before you think that I somehow “asked for” this, read here about how many people who get lung cancer now have never smoked. With that out there, let me just say one more thing…

I recently Google’d some general keywords to be sure that I wasn’t stepping on anyone’s toes by calling myself the Chronic Adventuress with a Chronic Illness, and was disgruntled to find out that there are a heck of a lot of “experts” out there writing about living with a chronic illness who don’t have a chronic illness. That decided it. I have the first hand experience to back it up. And, I can honestly say that I’ve had to change my lifestyle very little since my diagnosis, thanks to steps that I have taken to preserve my well being. I’ve intentionally peppered this post with photos of me winning at the game of life. All of them were taken post diagnosis.

Without further ado, here are my six suggestions:

1) Get the best medical care possible

2) Seek no sympathy

3) Find new ways to do what you love

4) Find new things to love

5) Surround yourself with positivity

6) Don’t let your illness define you

I planned to talk about all six points in this post, but I know the limits of the human attention span circa 2021. Having the opinion that these are all crucial (and we are, after all, talking about life, and living it as happily as possible,) I think they all deserve to be fleshed out, and I will give them all their due, even if I have to write several different posts! So for now, let me talk a little more about #1, GET THE BEST MEDICAL CARE POSSIBLE.

The best medical care possible? A no brainer, right? If I thought it was a no brainer I wouldn’t even mention it. Getting the best care possible is not a matter of insurance or money or location. It is a matter of choice, plain and simple. While I’m extremely fortunate to live within driving distance of some of the best medical facilities on the planet, don’t think for one minute that patients don’t travel great distances across states, countries, and oceans to get here. And don’t think for the next minute that there aren’t people who have access to the same care that don’t seek it, because there are. I urge everyone I talk to who has a serious illness to research the best, and get it any way they can. The more serious your illness, the more likely you are to need something beyond your local hospital. Don’t waste precious time getting what you need and deserve!

I’ve now exhausted your attention span!

I promise to get back to this discussion soon. Until then, adventure on!

Finding A Middle Ground

Hey, did you notice that I changed my site identity from “The New Face of Surviving Cancer” to “Write. Hike. Survive. Thrive?” Yeah, I guess I’ve decided that I don’t want to be the former and would rather concentrate on the latter. Make no mistake, I am not ashamed of who I am now, with cancer survival on top of everything else I’ve managed to accomplish in my life, but the last couple of months have been pretty tough on me and I find myself desperately needing to find a middle ground. I cannot be all cancer all the time.

When you join a clinical trial, (another thing I never wanted to do but have to do if I want to live) you’re kind of at the mercy of the drug company, or “sponsor,” as they so poetically refer to themselves as, and that has been the story of my life for the past five weeks. Don’t get me wrong, I’m thankful that it appears that I’m making progress. And what the heck else is there to do while we’re all trying to figure out whether COVID19 is coming or going! But I’d still rather be left alone to live my life. Only, that’s the whole point. If I’m left alone to live my life I’ll die. Understand now?

I started out a year and a half ago with this big plan to ditch the fiction writing career I had craved since I was a teenager to focus on nonfiction books and blogging. Hiking and traveling would be my favored subjects. Then cancer came a calling, and I decided that I’d roll with it. I’d start speaking at libraries and other local public places about being a cancer survivor and turn it into a full time gig. COVID19 blew that to smithereens. But I continued to work on a book about my journey, which I finished at the end of 2020. After taking a break from the writing to let it settle for a couple of months, I opened it back up this weekend, read six pages and said, I cannot continue to relive this nightmare.

So guess what I did? I opened one of my “writing drawers” and allowed it to swallow up my “cancer book.” Meanwhile, a fictitious tale of a pretty girl and a football player jumped out. It was one of three other full manuscripts I have hanging around, waiting for the attention I never thought I would give them. But guess what? Fiction is sounding like a hell of a lot of fun again. A hell of a lot more fun than I’ve been having lately. Truthfully, I don’t think it’s a really hot time to be writing books about the hiking and traveling that most of us have not been able to do much of in over a year. And I so want to continue writing books. What can I say? I love writing books. Fiction may be the key again. But I also love blogging. Who ever said I can’t do both? Me. It seems that now and forever, I’ve always been my own worst enemy.

Especially over the past several weeks. My mood has been dreary, at best. My beefs, not necessarily in this order: I have this flippin’ disease. It’s snowing and cold and windy in New England. I’m going up and back to Boston in the worst of it and getting stuck with needles and tested to high heaven to keep me from going to high heaven. Even if I could travel I can’t travel because of a global pandemic. Then my fingers start doing the walking to search out the very worst information I can possibly wrap my mind around about Stage IV lung cancer and yeah, then I’m in the hole big time.

Jeez, enough is enough.

Here’s what I realized the other day. Who is telling me I’m not going to be alive to see the end of the pandemic? Me. Who is telling me that I’m not worth anything now that I have cancer? Me. Who is telling me that I’m never going to travel again? Me. Yeah, I’m the culprit. To repeat: my own worst enemy.

Back to finding the middle ground and the search for some firm footing.

I’ve never been one to live one day at a time. No, more like a whole lifetime in a day with my eye on an even better future. Maybe I get one day at a time now. Still, I need to have plans. I’ve decided it’s safe to look into the near future. And I’m not spending all my retirement money to “live like I’m dying” because I know how that goes. Anyway, I’ve spent the last decade living like I was dying. Yeah, really. Things were pretty good there for some time. Can they be again, in spite of everything? I have to believe they can. But I can’t be too sure of it, because I don’t want to be devastated again. I am moving forward with caution, and with the knowledge that I will still screw up and wind up in the hole again.

But hey…It’s spring. My treatment appears to be going in the right direction. Southern Utah is on the April horizon. I’m thinking about summer road trips. And oh yeah, that book…

I can do this!!!

About Those Cancer Posts

My next post was supposed to be about a couple of cool hikes that I’ve recently done, but I saw something on Facebook that put me over the edge and I need to have my say about it.

Listen, I know that you’d rather me blog about hiking than cancer. And yeah, I’d rather be blogging about hiking than cancer. I’d rather be doing just about anything than talking about and worrying about and reading about cancer, but here I am, about to write yet another post about, you guessed it, CANCER.

Why? Well, let me explain.

Cancer sucks, if you don’t already know that. I hope you don’t. I hope it has never touched your life. If it hasn’t, you’re in the minority. So many people I know have lost mothers, fathers, sisters, brothers, husbands, wives, and children to this beast that nearly took me a year ago. This monster took my sister five years ago. It’s horrible. I have first and second hand experience at cancer.

And guess what? I’m sick of it. I’m especially sick of people who don’t have cancer going on cancer sites and making comments about how “Big Pharma” is withholding a cure, and how CBD oil made their father’s cancer go away forever. Both are major myths, both are words that no one with cancer wants to hear. So stop saying them. I also love the ones about green vegetables and green tea being the answer to everything. Sure, good luck with that. (When your cancer disappears because of iceberg lettuce, let me know, okay?) But none of these examples are what really got under my skin a few days ago. Here’s what did me in: one of those “copy and paste, don’t share” posts that run rampant on Facebook. Now is when I would normally say, “Don’t get me started on that,” but it’s too late, the damage is already done.

First of all, who writes these things? I want that job, and I want to get paid well for it. Because I can write from experience and compose something better, more truthful, and more accurate than whomever is putting this shit out, particularly about the subject at hand. Furthermore, some of my friends that post these things write better than that, but they repost this crap anyway. Not only have I learned things about cancer that I never wanted to know from these stupid posts, but I’ve also been hit in the face about how I need to curb my jealousy when a twenty year old woman with a beautiful body walks by, because I once looked like that, so I need to get over my desire to wring her pretty neck. Only I don’t want to wring the neck of the pretty twenty year old woman because, cancer and all, I don’t want to be anyone but me. I honestly don’t want to be her. Facebook is mistaken, and so is the loser who wrote the viral nonsense.

But, I digress. The “copy and paste, don’t share” post that has me frantically punching the keys of my computer was all about cancer treatment and was meant to honor me as a “warrior,” in my “battle” against chemo and radiation. The offending words remind me that after chemo, I will never be the same again, may never even feel “alive” again. My immune system will be ruined, and so will most of my relationships, because of the damage done by treatment used to “fight the nastation.” (Ooooh, that little red line under “nastation” is telling me that some smarty pants is making up fancy words for Facebook! Don’t get me started on that!) In short, my life is going to suck royally because of cancer, “a very aggressive and destructive enemy of our bodies.” OUR bodies? Is the writer as well as the Facebook user that’s so busy copying and pasting trying to imply that they also have cancer? Because if that’s so, said person better get researching, because he/she/they/ whoever they are, are way off.

First of all, thanks for reminding me that I’m never going to be the same. As if I need anyone telling me that as I struggle to get “me” back after my life was turned upside down. Secondly, before you EVER post such hoo-ha, realize this: the combination of traditional chemo and radiation will eventually become a thing of the past, and in many cases, they already HAVE. Thousands of cancer patients have infusions of immunotherapy or take pills to kill the disease. I didn’t need chemo. And radiation for me was a CHOICE I made because it has made a cure more likely for me. I walked five miles a day daily while I had radiation, not because I was trying to show off or prove something, but because I COULD. I rocked radiation, and I’m sure I’m not the only one.

I know these posts mean well, as do the individuals hitting the handy little “copy” button. But they’re also extremely negative and uninformed. There is enough misinformation out there about cancer. The real truth is that cancer is an individual journey, not a one size fits all. Some people aren’t going to do well, others are going to beat it. I’ve known many of the former. I’m one of the latter. And in response to everyone out there frantically spreading the nonsense and giving advice about green vegetables and CBD oil and lifting the middle finger to “Big Pharma,” I’m intentionally littering this post with photos of me loving life even as I give cancer the boot. Every single picture here was taken after my diagnosis.

Copy and paste THAT.

Season of Struggle

Well, here we are again. September. The last weeks of summer. Here in New England, a lot of locals are getting ready for what they hope will be a colorful and fabulous leaf peeping season full of apple cider and crisp breezes. But not this local.

This particular local has a dull ache in her stomach that she can’t get rid of as she watches the summer wane. Because this time of the year always reminds her of loss. This time around, even tougher.

In October of 2019 I nearly lost my life to cancer. I was on my way out, on a slow, painful boat motored by metastatic lung cancer, the deadliest bitch of all. But long before that, autumn was the season of the loss of my beloved mother, and that hurt has never quite gone away. Now, added to that is the fear, the trepidation of moving forward, lest I be forced to take several steps back again. I’ve lost a year of my life to the scoundrel nicknamed “the Big C.” Maybe there will be more? No please, no more.

Even before the loss of Mom, the loss of the season of the sun was a shock to the system of this self-proclaimed summer girl. Even as a teenager the question loomed, How many more of these days of sunshine do I have? It sucks sometimes to be human. I want a million more summers. And while we’re at it, why do I have to get old? Because summer was made for youth. Just ask Instagram.

I have a triple whammy on my hands now: cancer, mourning my dear mother, and the retreat of summer. Wait, make that a quadruple whammy, because this is the season I also have to return to the stress of teaching after a mostly carefree summer. That is, if a summer that includes the kind of radiation that happens in a cancer clinic, and not just the kind that takes place on a flat stretch of glorious white beach, can be called “carefree.” If the duration of nine lazy weeks includes long trips on airplanes to exotic locales on the other side of the world and isn’t cancelled by a pandemic. None of that and all of that happened for me this year. It was a good and productive summer, make no mistake, but it wasn’t what I planned. Add to that the fear that…Oh, never mind. You get it.

Now, don’t get me wrong. I’m doing well. Chances are excellent that I’ve beat cancer. I’m not terminal. Yes, there will likely be many more summers for me if my luck holds out. That is a big IF that I’ll live with…as long as I live. Such is the plight of the individual who survives a life-threatening illness. No one really understands, unless they’ve lived it…and almost died by it. You, whose life has not changed one iota in the last year/five years/ten years, don’t pretend you do. You’re forgiven for your ignorance, as long as you don’t try to pretend you know what it’s like. Someday, you may just have to walk a mile in my shoes. But I hope to hell not. It’s only for the strong.

If you’re me or someone like me, questions will be swirling in your mind as the sunshine cools and the earth dies: Why me? Why did I survive and others didn’t? Do I deserve this? Do I deserve cancer? If so, why? What did I do? If I didn’t, why did I get it? And what am I supposed to take away from it? Wow, I have some blogging to do.

Cancer may be over for you looking in, but it isn’t over for me. I’ve got all of October to think about that now.

Sometimes, as I recently shared with my most trusted family member, when the ugliness of life and humanity closes in, an even more painful question pushes through: Should I have died and escaped it all?

Escape never sounds interesting for very long, because I’m not a quitter and I don’t hide from adversity. I’m also not a liar or a genius or a perfect specimen. I allow myself my faults when others don’t. Come to think of it, I allow others their faults when they don’t allow me mine. Which brings up more demands: What is my worth? My worth in being here? Some would have me believe I have none: I’m worthless because I don’t agree with everything they say, because I don’t play by their rules. I must banish these thoughts. I’ll have all of November to quiet them.

That’s when the autumn sun splashes out from a floating cloud and I get my shit (and my hiking poles) together and remember that I fought this fight to win for a reason: I love life. That’s the rub. I fucking love life. This life. My life. The only one I have. The one that some have tried to sum up in three words or less even though they’ve never taken the time to find out who I really am. There ain’t no one out there that is allowed to bring this girl down for very long, not even Mother October, the worst month in the history of me.

Pass me my boots, please?

My life has come full circle, regardless of a season or a virus, or a disease. So, fuck cancer. Fuck COVID19. I’m going to New York, my sparkling Big Apple. And the White Mountains. And South Carolina. And California. And I’m getting Global Entry for when it’s really time to travel again. I’m living my life as I see fit. I’m making my feelings be known. It ain’t all about you and what you want. It’s about me, too. And baby, when you achieve the improbable, it isn’t so easy to forget. Who wants to forget,anyway? Not me, not until I’m good and ready. Until then, I’ll shout it from the mountain tops until I drive you mad. Cancer, cancer, cancer. I survived fucking cancer. I survived the death of my best friend, my traveling companion, my mother. I held my sister’s hand while she died of the same disease one mind numbing January. I saw my father breathing his last breaths one raw February when I was ten. And I’m still standing. And smiling.

And even better, spring is one day closer.

What No One Tells You About Survival

Love Banner Three

As I begin this blog, I’m finishing up what will hopefully be my last round of radiation to eradicate the final vestiges of cancer in this vessel of mine that held so many ugly secrets. We’re talking years of feeling like crap, with no clear explanation. Now I can hopefully put my life back on track and move forward. Endings and beginnings. And ugly secrets.

I don’t believe in negativity. But I do believe in being honest and up front. Thus this earnest discussion about being a big time survivor and what it does and doesn’t mean.

Stage IV lung cancer. I don’t look at statistics anymore, but they’re damn grim. I know that from obsessing over them at the beginning of my crazy journey, back when I was destined to die. Now, with CURE being mentioned more and more and EXCELLENT OUTCOME floating hypnotically around like a sweet drug, I can reflect on other things in between high-fiving myself for getting through this, and looking toward a more certain future. I hardly accomplished this on my own, and contrary to the popular beliefs of some, I appreciate everything that has been done for me. But I also had a lot of things happen to me that could and should have been avoided, events that only served to pile on more hurt, and yet more worries to weigh heavily on my mind, which was (and is) already ready to burst. Makes a girl skeptical, to say the least.

Herein lies a sad truth: Not everyone who gets cancer or other life-threatening illnesses are surrounded by supportive loved ones. If you are, consider yourself very lucky. Some of us have to make the most of the ones who are, and extract the rest of our healing from the kindness of strangers. Here’s the side of the survivor story that you may not hear about amid all the parades and fireworks.

Before cancer, I always wondered how my detractors would treat me if something truly terrible happened to me. Now, I know.

If They Resented You Then…

…they aren’t going to stop resenting you just because your life is going down the tubes. I had a great life before cancer. I still have a great life. In between, not so hot. People who don’t like that you made a better life than them might just be happy that you’re struggling. Maybe they’ll want to see you struggle more. And they’ll pile on the negativity. A few individuals in my life have been putting the screws to me all along. Just remember that these people are sicker than you will ever be.

Short Memories Never Cease

Listen folks, cancer ain’t fun. Needles and scans and treatment ain’t my idea of a party. Yeah, it’s gotten the best of me at times. Admittedly, I have not always been nice. But I’ll also note that the past year of my life has chipped the BS tolerance meter down to just about nothing. I never had much of a filter, but now, even thinner. So if you start slinging crap at me, you’re going to get it back tenfold. I’ll hand your microscope back to you on a silver platter. And herein lies the next discovery: People will only remember what you do to them, not what they’ve done to you to warrant your feelings. Best to just let them wallow in self-pity and keep doing your thing.

Infantile Behavior

Name calling, back stabbing, changing sides, being unable to apologize and move on, spreading my delicate medical business all over town. All things I’ve had to deal with on top of cancer. Imagine being called first grade names by someone who is supposed to understand and love you. Imagine that same someone teaming up with your other detractors as soon as things don’t go her way, even though she was there when your life was on the line. It happens, folks. I question my choices now as much as I question theirs.

You Change, They Don’t

Cancer absolutely changes the lives of many people, not just the patient. Loved ones have to find their own ways to deal with your illness and do their own form of grieving and coping. Yet the reality is that this disease and others like it is worst for the person who really has it. The hardest thing for me was the “not knowing” if I would even be alive to see the calendar flip to 2020. There is no feeling like this that I can even compare to the reality that your life is going to come to an end prematurely, and you may not have any choice in the matter. Add to that the endless hours of needle biopsies, lying in MRI tubes with ear-shattering noises echoing in your ears, trips back and forth to specialist after specialist. Meanwhile, those whose lives don’t change at all will increase your discomfort while continuing to disrespect the dramatic changes that you are going through, alterations that they would never be able to deal with.

Downplaying Your Hurts

Back before my treatment options and prognosis changed dramatically, I had a port surgically placed and was faced with chemo. This was the first time that my skin had ever been cut. The port was a degradation for me, and now the scar left after having it removed isn’t much better, though my niece recently suggested to me that I consider it a “battle scar” and wear it proudly, so I’m kind of liking that idea. The real kicker about the port was that I didn’t need it, nor did I need chemo. But when I was in the heat of all this, I was the only one who thought the cutting of my skin and the loss of my hair was a big deal. (Yet, no one agreed to go bald with me, so there you have it!) Sure, a lot of cancer patients require chemo and make it through, so big whoop, right? Right! Until it’s you. Then see how great it looks. Lesson: don’t ever simplify the hurt of others.

Empty People Won’t Suddenly Fill For You

Individuals with nothing inside of them exist. Cold, uncaring, unloving, narcissistic blame factories that won’t just suddenly start acting human for you. It is beyond their capabilities. Enough said.

Telling, Not Asking

In the world of professional writing, the one banging away at the keyboard letters always has this line in mind: show, don’t tell. In the world of life-threatening illness, this has to be changed to ask, don’t tell. Since I was diagnosed with cancer, I’ve had too many people making assumptions about the way I feel. Sometimes, the way I look is presumed to be the way I feel. I look good so I must feel good! I look tired, therefore I must feel like crap! I must be dreadfully unhappy because of cancer! (True enough, though at least in my case it’s better to say that the joy of life was suppressed. That golden gate has been reopened. Those who have never found true joy in life would not understand this.) I can think of many adjectives used to describe me that were totally false, when all the speaker had to do was ask and give me time to speak to get the real answer.

Special Note: my medical team is not guilty of this. They get it.

A Word of Hope

If this is you like it’s me, find the right folks and stick with them. The positive ones. The hopeful ones. The ones on social media that you’ve never met but are generous enough to try and lift you up rather than crush you even further than you’re already crushed. The ones you don’t see everyday, but who can give you a lift with a friendly text or call or email. Thank goodness I have a lot of those.

And just fight your best fight. Strength, courage, integrity, the will to live that no one can take away.

Some will resent you for it. Let them.

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Why Beating Cancer is a Lottery

Big Win

You can’t win if you don’t play.

And sometimes, you can’t win even if you do.

Does that title sound weird? Apologies ahead of time, but the more I deal with this disease and the more I hear of other people’s struggles with it, the more like a lottery cancer seems. One of the most interesting, but cruel, things about the Big C is that it isn’t choosy who it kills and who it spares. I call it “the great equalizer.”

Earlier in the week, we learned that the lovely Kelly Preston, John Travolta’s wife, was secretly battling breast cancer for two years. Alex Trebek has been beating the pancreatic cancer odds for about as long. And we know that Steve Jobs, in spite of being a billionaire, lost the fight after eight years. Yet, a poor chick like me can get some top shelf medical care and do okay.

On June 22nd I had my third PET scan, three months after pinpoint radiation to my lung. My radiation oncologist at Dana-Farber felt as though she would be able to cure my lung tumor…and did. My scan was nearly clear, and I have Stage IV lung cancer, the biggest cancer killer by far. Granted, my metastasis is very limited and, in fact, does not include any other major organs. Even so, good luck finding a case like mine out there in medical land.  This doesn’t happen on a regular basis. I have been extremely lucky. I’m not supposed to be here and wouldn’t be if I didn’t go to a comprehensive cancer center for my care. So yes, I’m winning the cancer lottery!

The cancer lottery has little to do with money. Buy your ticket, pick your numbers carefully, and hope for the best.

Back to that PET scan for a minute. One small sight was still lighting up, a node in my right shoulder muscle. Currently, I’m in Boston undergoing fifteen treatments of radiation to rid my body of the last traces of a disease that normally kills people much stronger than I.  I fully expect that my next scan will be clear.

Sigh.

How did this happen?

First, let me point out that I didn’t get lung cancer because I was a smoker. Yes, I smoked when I was a teenager, but the cause of my disease is what my oncologist refers to as a “genetic accident.” No one knows when it started, but there’s a fair chance that it had been growing for many years, and wasn’t discovered until last September, when a tumor started to appear in the area of my sternum. As horrendous as it was to have a visible tumor, the fact that I could see it is yet another way that I got “lucky in an unlucky situation.” Lung cancer rarely has signs that can be seen. As I sit here typing this I’m overwhelmed by how things could have been so different for me.

I also won the treatment lottery. Because of a mutation in my tumors, I bypassed chemo and was able to take a pill to shrink my cancer down to a size where radiation could be used to eradicate the remainder. Cutting edge treatment, folks. Of course I’m really simplifying it. The fact that the medication worked so well was another miracle. Jeez, did I ever hit the jackpot!

As I walk the polished floors of Dana-Farber and Brigham & Women’s in Boston, I see little old ladies just out of chemo bent over in wheelchairs, and little kids with bald heads taken from appointment to appointment by their vigilant and exhausted parents. No one wants to lose this battle.

A growing number of cancer patients become long-term survivors. We know what happens to the rest. But what’s the deciding factor?

Luck definitely has a lot to do with it, and a fortunate roll of the dice. But making good decisions has a major chapter in the plan book, too.

Here’s what worked for me.

First and foremost, the best medical care that I could get. After that, a predominantly positive attitude. Prayers and good vibrations from whomever was offering. Sidestepping negativity. Fighting to keep my mind and body strong. Educating myself as much as I could in all things lung cancer, and cancer in general. Getting back to doing the things I love to do sooner than could have been predicted. Being in very good physical shape to start with. Having a decent diet. Finding the joy in life again. Asking questions and getting answers. And relishing the miracle.

Are there people who do all these things and don’t get positive results? Unfortunately, yes. But don’t be one of the ones who doesn’t try.

As Americans, we love talking about who wins the Super Bowl and the World Series. We marvel at athletes in the Olympics and Wimbledon and the Indy 500. But here’s what a cancer survivor knows: There’s no bigger fight than the fight for your life. And when you win the cancer lottery, you’ve done something pretty special.

Play to win.

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The New Face of Surviving Cancer

What’s so new about surviving cancer? A ton.

As I travel this road of being a cancer survivor, I’m learning a hell of a lot. Maybe more than I ever learned as I crisscrossed the globe for two decades. Maybe more than I learned my entire life. Absolutely more than I ever wanted to know about this particular subject.

Now, it’s my reality and I’m going to live it. And if I can help others in the process, even better. Every dark cloud has a silver lining, right?

But let’s get back to that new face of surviving cancer.

What’s your perception of someone with the Big C? It’s this, right?

Chemo Two

This may still be reality for some unfortunate enough to get this disease, but not all. What if I told you that every single picture of me in this blog (and most on my website) were taken after my diagnosis, and that my appearance didn’t change at all as I’ve gone through treatment? That there are people wandering around out there in the world, like myself, that have cancer and you don’t even know it unless they tell you? You’d call me a liar, but that’s okay. It gives me a job to do here, changing your perception of what a cancer survivor looks like.

Let me just clear up one more thing.

You’ll see a lot of this stuff out there, too:

Chemo One

I’m going to title this one “Gorgeous Woman Who Has Never Known Cancer in Her Life Telling You That You Can Look as Happy and Fantastic as Her While Your Body and Your Identity Get Depleted By Chemo.” This is called “putting a happy face on a really crappy situation.” It’s misleading advertising at its best and worst. And this is absolutely not what I’m aiming for here. Nor am I suggesting that every chemo patient is ugly, or that any chemo or cancer patient is ugly. I’ve seen people look absolutely stunning in head wraps and/or wigs. Don’t know how they do it. I admire them greatly. In general, I think strength is way more admirable than the Kardashians.

Disclaimer: I was lucky enough to turn my back on chemotherapy, but was less than twenty-four hours away from having it when I was offered cutting edge treatment at a comprehensive cancer center.  I don’t know what chemo is “like” and I don’t plan to. But I do know what it’s like to think that this is the only way to rid my body of this demon called cancer. I was almost there. My lucky stars aligned and I was saved this misery. And this is why I’m so different.

I have lung cancer. And no, it’s not because I smoked, and no it is absolutely, positively not okay to assume that or to ask me about it as if it’s a given fact. That’s an unfortunate way the face of cancer is changing: lung cancer is on the rise in populations in otherwise healthy individuals like me. But that’s for another blog. For this one, let’s get just a bit deeper into two of the reasons that cancer is getting a much needed makeover.

I was diagnosed at a local hospital before I went to Dana-Farber in Boston, which is consistently in the top five cancer research institutes in the entire United States. My local hospital was prepping me for chemo and radiation, but had the good sense to send my biopsy tissue out for what is referred to as biomarker testing, though it may also be referred to otherwise. I can’t even stress how important it is to get this type of testing done if it’s available for your type of cancer. It could be the difference between vastly different treatment scenarios. It could be the difference between life and death, as it was for me. When you settle for chemo and radiation as a first line treatment, that is all you’re ever going to get, and at many small cancer facilities it may be your only option. I know now that if I had not gone to Boston I would not have lived long. Scary stuff.

If you’re fortunate enough to have a biomarker, you may be able to have something called targeted therapy, which is what I’m on. It’s basically a pill that targets the specific mutation in your tumor but usually doesn’t destroy anything else, like white blood cells, which is what chemo is known to do. Targeted therapy drugs often have many less side effects than chemo. It may sound far fetched, but the therapy that I take daily started shrinking visual tumors I had in less than a week and set me on the path of getting my life back. Results vary, (mine was phenomenal) but many people have great responses to these wonder drugs.

The second fairly new treatment is called immunotherapy, which uses your own immune system to attack cancer cells. Like targeted therapy, more cancer survivors are living longer lives with infusions of immunotherapy. Many options are available, and I’ve read several success stories.

It is accurate to say that targeted therapy and immunotherapy are rewriting the script on cancer and putting more people in the survivor column.

Before you accept chemo and radiation, be sure to look into all your treatment options.

And join me as the New Face of Surviving Cancer.

Advocacy, Not Lunacy

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We live in a world where the word “advocacy” gets thrown around a heck of a lot. Me, I use it all the time. Lately, even more. For years, I’ve advocated for my older sister, who is severely disabled, and for my students, who are to varying degrees, also disabled.  Since September, I’ve had to add myself to the list of people I have to advocate for. Being diagnosed with cancer opened up a whole new world of advocacy. In all these forms, I’ve seen some pretty bad examples of what an advocate is and isn’t. Recently, I had the misfortune of being in a meeting for as student in which an advocate made it a point to stand up and yell at me. I was hardly her first victim. Her behavior prompted this blog post.

A couple of days ago I was witness to another poor example of advocacy. Now, I know I’m not supposed to be listening to the medical business of others. But it’s kind of hard not to when the “patient advocate” is getting hot under the collar in the reception area of a world famous comprehensive cancer center. It was all over an appointment with an oncologist that the young lady at the desk was trying unsuccessfully to help him with. Evidently, the patient in question wasn’t on the doctor’s appointment list. Who’s to blame for that? The receptionist? Probably not. But the “patient advocate” started kicking and screaming. “This is Stage IV lung cancer, a life or death situation!” he proclaimed, while the patient and his wife stood by, neither of them looking ready to keel over and die. I’m not making a joke here; I have Stage IV lung cancer, I know it’s no joke. What is a joke is that this “patient advocate” was getting himself in a twist and heightening the moment to a downright lie. Unfortunately, my dealings with advocates have been much the same as this. Furthermore, the “patient advocate” didn’t say anything that the patient himself couldn’t have said. Let’s be real here. Self-advocacy, if possible, is a lot more impressive.

I understand better than anyone that self-advocacy isn’t always possible. My sister is non-verbal, so I have to be her voice. Have I gotten into some tangles on her behalf? Yes, I have. Have I yelled at people? No. Have I lied for her? No. Have I been realistic about getting her what she needs? Yes, I have. And these are the real points of advocacy. Making respectful requests, being honest and open, and most of all, being realistic about what you’re asking for. I have not met too many professional advocates who stick by these rules.

Let’s go back to the student meeting. The advocate showed up wearing a dress with a severely plunging neckline, and bedroom slippers. The mother of the student in question didn’t say a word, but exhibited all sorts of nonverbal responses. Eye rolls and deep sighs were really big. When anyone tried to ask her a question or get an opinion, the advocate in bedroom slippers would cut in and say, “Mom is too upset to talk.” She was so upset, in fact, that she had to play with her cell phone while the advocate raised her voice, tried to make others in the meeting feel stupid, and made unrealistic demands for a student that misses at least half of the school year with questionable medical concerns. This folks, is not advocacy. It’s lunacy. Don’t get caught in this trap.

Here’s reality: not everyone with a serious disease is going to live. Not everyone with a serious disease is going to die. Not everyone with a life-threatening disease is ready to expire at any moment. (Take my word, cancer can be pretty boring at times!) Not every child is going to college. Not every child needs to go to college. Not every person with disabilities is capable of fulfilling lofty goals. Not everyone is going to get what they want out of life just because someone with a big mouth is speaking for them. Being the right kind of advocate is not about having a big mouth and thinking you can yell and accuse people of things they aren’t doing. Thing about it: when was the last time you got what you wanted by getting bent out of shape?

With that thought in mind, if you decide to hire an advocate for any purpose, for yourself or a loved one, remember: make respectful requests, be honest and open about your hoped for outcomes, and most of all, be realistic about what you’re asking for.  Otherwise, be prepared to be disappointed.

And please, please, please, look under the desk. If you see bedroom slippers, run.

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