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.

A Different Kind of Summer

Hey, how was your summer? Okay, I know, it’s not over yet! But if you’re a teacher like me…Well, yeah, it kind of is over. Believe me, I can’t wait to retire so I can rethink summer and make it last until September 21st!

Kids and adults are returning to schools that look a lot different than usual. For me, I’ll be teaching over a computer until at least November. But COVID19 is hardly the first thing that rocked this teacher’s world and changed the way I had to look at it. Cancer did that first, then the virus extended the weirdness for me. In fact, I was set to put my traveling life completely back on track this summer after being blessed with an amazing medical team and treatment at a major cancer center. The corona virus stopped me in my tracks, like it did for so many others who had to give up hoped-for plans and stay put instead. I still had a very busy summer in which I accomplished three major things: I got back on the road, saw my beloved niece Amanda again, and with any luck, killed the rest of cancer. Though it was hardly my typical summer, it could ultimately turn out to be the most important one of my life.

The necessity to alter my schedule opened up some compelling opportunities for me, and gave me more time to remember how necessary it is to make time for simple pleasures like taking a ride with the top down on my Bug, hitting the trails with new and old friends, hanging out with animals wild and tame, and exploring my own backyard. Yet, I was still clinging to the possibility of road tripping through the Mojave Desert, Northern California, and Oregon. I was not able to confirm any major plans until after a scheduled scan. This time, it was my post-radiation PET scan in June, which would tell how effective the treatment to the primary tumor in my lung was. It wouldn’t be so wrong to say that my life depended on the outcome. Miraculously, the CT was nearly clear. Just one more small area of cancer, but it would require three more weeks of radiation. Which decided the course of my time off: I would spend two weeks on the road, with most of it in South Carolina with Amanda, then return home to spend three weeks in Boston eradicating cancer. Never have I ever booked hotels two days before heading out on the road! But that’s how tight things were between my scan and the beginning of my plans further from home.

Anyone who knows me or follows me on social media knows that one of my major fun goals is to hike all the national parks in the United States. That dream really got derailed by cancer, but I got the idea to take a couple of days to finish a park that narrowly missed getting taken off the list because of car problems a few years back: Shenandoah, in Virginia. Gettysburg, Pennsylvania, always a favorite Eastern Seaboard stop when my mom and I used to road trip, also appeared on my schedule. Now I was more excited than ever! Get back to national park hiking, see an old favorite again, and spend a week with my niece. Sign me up! I also promised myself that I’d make the most of my time in Boston while I was there for radiation.

Well, check them all off the list! I left on June 29th for a 400 miler to Gettysburg, where I spent a few evening hours exploring a fascinating historic town I don’t remember at all but was happy to see again. What I was really looking forward to came the next morning: Gettysburg National Military Park, a must-see of lifelike statues that tell the story of the winners as well as the losers of the Civil War. I found it very important to see the park again, with all that is going on in our country and the questioning of our history.

The weather got more humid as I headed south, but that didn’t stop me from walking several miles in the park. After a morning of exploring, I drove to Virginia for the evening. The following day, July 1st, I arrived in a tiny town in South Carolina to get a whole lot of niece love and dog love, and to have Thanksgiving dinner in July! I was supposed to be there last turkey day, but cancer had other plans for me. It was well worth the wait!

Amanda ran her crabby old aunt all over the area of South Carolina that falls between “the Greens,” Greenville and Greenwood. Our new tradition is bowling, our old one is Chinese food, but we can’t ever get away without going to Walmart! I’ve never stayed for a full week, so I got a better taste of her life and met more of her friends, too! A favorite memory is the full attention I got from Miss Shelby, Jax, and Chevelle, her three fur babies!

As always, leaving them and her behind was tough, but radiation in Boston was looming, and I still had a national park to finish!

After missing out on so much of my life for the past year because of cancer and COVID19, this view at Shenandoah was nothing short of SURREAL! I never thought that I would hike a national park again, much less do it so soon after a devastating diagnosis that was supposed to have a much different outcome. And yes, my emotions got the best of me as I looked out at the gentle, comforting sway of the Blue Ridge Mountains.

Moment of silence.

Back home, I had a quick turnaround before I left for Boston. I pulled in the yard at five in the afternoon on a Sunday, and headed to Beantown at ten the next morning for an early afternoon inaugural radiation session. First, I had to haul all my clothes and food into my room at Homewood Suites! I did this three Mondays in a row after driving home every weekend. Really tried to make my stay like a vacation. If it wasn’t for that damn radiation I may have been content! Oh wait…that’s the only reason I was there!

Boston is a lovely city, and Dana-Farber Cancer Institute is in the Longwood section of Brookline, where stunning Victorian homes line the leafy back streets, making for pleasurable city walking. I took the MBTA into town a couple of times too, and enjoyed old and new favorites, but Boston will always mean something different to me now that I’ve been there so many times for cancer.

I was so thankful to get home after my last treatment, with my radiation mask in tow! Muffin, who was an orphaned bunny being taken care of by his fairy godmother (my sister Marie!) was truly the only living thing I wanted to see after being away from home for five weeks.

I still had almost four weeks to get my life back on track after the big interruption of radiation, and was soon back on my five mile a day walking schedule, taking extra precautions to protect my post-radiation skin from the sun.

Deep breath.

My summer was still full of fun and adventure. Because there’s more than one kind of adventure!

Maybe next summer we can all get back to normal. What do you think? I’m skeptical, but hopeful too.

Please do your part, wear your mask and remember to social distance so that we can all return to doing what we love doing best as soon and as safely as possible.

What No One Tells You About Survival

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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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A Survivor’s Ball, South Carolina

We’ve been through some sh*t together, we’ve been through some sh*t on our own. And last week, we celebrated again by reuniting.

Survivors are not born. They’re made. By struggle. By sadness. By fear. By learning and doing and enduring. I’m not afraid to appear narcissistic by saying that we’ve done them all and more and we’re still here and we plan on being here for a long time.

My beloved niece Amanda is in South Carolina, I’m in Massachusetts. She’s been on a journey of recovery from liver failure for a year and a half now, I’ve been on a Stage IV lung cancer road trip since last September. Neither of us are supposed to be where we are now. But we are. So there.

Traveling is one of the things that I am. I don’t just do it. Though I’ve been criticized for “how” I travel by some who think there’s some hard and fast rules to doing it bigger, better, and faster than me, the truth is that long before I got on an airplane or in a car, I was visiting national parks and monuments on by bedroom floor with a map open in front of my unknowing eyes.  I was discovering foreign lands through age-old National Geographic magazines open on the hall steps. To have the ability to travel taken away from me by cancer was a crushing blow. So imagine the double whammy of rushing down a runway on an American Airlines jetliner and seeing my brave and beautiful niece again all in one compact trip! If this sounds petty to you, maybe you’ll understand someday. I hope you do, but I also hope you don’t have to find out the way we did.

I never cared how I got to where I was going. How much my ticket cost as compared to someone else’s or how good my hotel room was, neither. It ain’t what you’re going to remember when you’re on your death bed. I care even less now. Just let me get there again.

Where was your last trip? Portugal? Good for you. Me, Hell and back. Beat that. But now I plan to make up for lost time, and my sentimental journey to South Carolina was the first step. In a near future blog I’ll talk about the fun stuff we did in more detail, like the trip to the gem mine and the working farm, both with gift shops, of course! But for today, I’ll just recount the more personal aspects of the trip.

Last fall, when I started on my cancer road trip, there was little hope for me to be sitting at my computer and typing this in an upright position, much less boarding an airplane and going places, for a hellishly long time, if ever again. This foray, and my story in general, is one of those miracles you read about in books about someone else. Sure, I was only gone for four days. And no, it wasn’t nearly enough time to celebrate life with Amanda. But in another way, it was the trip of a lifetime, to mark my existence truly beginning again, to set a precedent for getting my life back to the way it was not so long ago, and yet ages ago.

Valentine’s Day had already passed, but not really. February 14th, February 16th, what does it matter? They’re all the same when you aren’t supposed to be where you are, but you are anyway, by sheer force of luck, love, spirit, and whatever else got you there. Lots of presents were shared, tons of dog love, chocolate, and Smarties. How can you go wrong?

We ran around like teenagers and caught up on things. Pretended to be miners in Greenville. Went bowling because the movie choices sucked. Ate at a neat restaurant like the one we’d found in Boone, North Carolina last year. Ended the trip at our favorite China Garden eating seven different flavors of chicken and shrimp and drinking jasmine tea. It was there that I read the Survivor’s Ditty I wrote for us:

Once Upon a Time
Two cute chicks
Survived bad sh*t
Then went out
For Chinese Food
And when they were done
They lived and loved
Like there’s no tomorrow
THE END

Sigh. If only it were that simple.

Early the next morning, I had to leave her and come home to reality and appointments and killing cancer. For four whirlwind days it was like I was normal again. Wait, I am normal again. Maybe I was never not normal? Still trying to figure all this out.

It’s been a hell of a ride, and it ain’t over yet. As I sit and type, I still have treatment to endure. Fingers crossed that I’ve been through the worst of it. And you can bet that I’m hankering for that next trip down the runway. Guess where it will be to? If you guessed South Carolina, you’re right.

Making up for lost time.

Not Another Cancer Survivor’s Story?!

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Yeah, I’m a cancer survivor, and yeah, I’m writing a book about my journey. Told here for the first time, the tome’s working title is “Destination Life: My Cancer Road Trip.” Though everyone has a story to tell whether they have cancer or not, I think that my tale is quite interesting, perhaps even a little over the top, and not one you’re going to hear that often. Some parts of it are typical for sure. Yes, my life was devastated. (Though really, is having your life devastated “typical?”) Yes, I was frightened that I was going to die. And yes, I had an incredible amount of stuff to learn. This is probably where the “typical” part of my journey ends. Because I’m one of those people that eventually took control of my care, had a fair amount of good luck in a bad luck situation, called out the prayer warriors, eliminated negativity, and saw things turn around quite dramatically. I know the wonders of modern medicine. I know the power of Big Pharma. But I had to go through some poop to get to the right place.

Before all that happened, I was just a human being flailing with the thought that my life would never be the same again, and maybe I wouldn’t even have a life to look forward to:

It’s still warm in New England, and foliage season is approaching. Autumn is not my favorite time of the year as it is for many, but definitely a beautiful time, and one that I always enjoy hiking in. The leaves are changing colors, and so is the rest of my world. As my sister drives us home the “C” word starts to set in. I look at other people out the window and they appear so casual, so carefree, no worries in the world. They don’t have to think about cancer, but I do. And I come to understand something again, that I realized in 2004 after my mom passed: the world still goes on. Life goes on, even as you’re suffering, even as your life or your world has suddenly been dealt a devastating blow. The world doesn’t care. It has to keep turning for everyone else. It is one of the many sad facts of humanity.

As I write this post, I’m stronger than ever in many ways, but I had to find my wings to fly through my new life. It wasn’t always easy or positive. The ground I was walking on was shaky, uncertain. The fear was real, and debilitating. For a while, the news was getting worse. Here’s an excerpt from one of my darkest days:

A lymph node on the right side of the base of my neck is on the rise. Supposedly it’s on the PET scan, but wait…wrong. The one on the PET is in the lung, a hilar node. The neck node is unaccounted for. I discover it when I scratch my shoulder one night, while talking to my sister on the couch. So now there’s four areas.

          Or…five?

          Dr. L finds an abnormality in the back of my throat and matches it up on the scan. Now we have to find out what these two new discoveries are. The possibility of two different cancers is floating around. Could I really be that unlucky? Head and neck cancer, and lung cancer, too? The cure word gets tossed aside, the waters  muddied. The rug gets pulled out from under me again.

          More questions without answers are swirling around. This is an all-time low point. Two more biopsies are on the near horizon. The throat node requires a trip to another specialist, an ear, nose, and throat (ENT) doctor.

          Treatment looms too far ahead as cancer grows inside me, packing its bags for an adventurous road trip.

I wasn’t totally serious about this book when I sat down to type it from the original journal I composed in longhand. But I’m committed to it now, as hard as it is to relive such heartrending moments so soon after they happened. Yes, this was only four months ago. Oh, how far I’ve come since then!

I don’t know how this particular book will end, since my new life is still unfolding in the most interesting of ways. Nor do I  know when it will be done. I’m not on a schedule; I’m in no hurry. But I’m pretty sure that it won’t be the only book of its kind. Thinking it might be a series. I have a lot to say, and I’ve always wanted to write nonfiction. Here’s my chance!

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What You Must Do After a Cancer Diagnosis

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Happy New Year! 2020 has had a much better start for me than I thought it would. Getting a cancer diagnosis at the end of 2019 tossed me for a major loop and changed my life forever. But by the grace of some force much larger than me, and after learning a heck of a lot and making some pretty good decisions, it’s looking like life as I knew it isn’t so far away after all.

Believe me, folks, I’d much rather be writing about road trips and adventures in Sri Lanka right now and not having to worry about this cancer stuff. And I will be getting back to those posts and those travels. But after taking a three month road trip to hell and back, I have to share the knowledge that I’ve gleaned, and I must use it in a positive and helpful way.  I swore from the beginning of this journey that I was going to make good things come of it, that I was going to find the silver lining, and I have, in more ways than one. So allow me to share what I’ve learned. If you can’t use my advice for you, please use it for a friend or loved one. Everyone is touched by cancer in some way, even if they don’t have it. And one other thing: I am no expert, but the learning curve has been extreme.

Gather the Troops

Don’t fight the battle alone, and don’t push people away who want to pray for you, send “positive vibes,” or stand by you, even if you might not have the same beliefs they do. Likewise, if someone thinks they know what you’re feeling, claims to know you were ill before you did, wants to tell you what to do, or, heaven forbid, is jealous of the attention you’re getting, say good-bye. (Yes, all the above happened to me!) More people will stick by you than you can possibly imagine, and there will be surprises. Whatever you do, don’t underestimate the sheer power of a whole bunch of positive energy coming your way.

Do Your Research

This should be a no-brainer, but take my word, it isn’t. I’ve met too many men and women in the past three months that put their lives into the hands of doctors and believe everything they’re told. I’m not saying that doctors lie. No one becomes an oncologist without studying long and hard. But we’re talking about your life here, this is serious business, and you owe it to yourself and your loved ones to get any knowledge you can about your condition. Some good places to start are the American Cancer Society and the National Cancer Institute. Read, take notes, start a binder of information, and bring it to every appointment that you attend. There will be a lot of them. Arm yourself with useful information, weed out the bull. Learn the difference.

Don’t Place Too Much On Statistics

Of course you’re going to read them. I couldn’t get enough of them, and believe me, the stats for lung cancer are not encouraging.  But understand this: current statistics are old, and they don’t reflect breakthroughs in treatments. They don’t even take into account the fact that a particular patient may have died of something else other than cancer, only that they died, and so are included in the number. Furthermore, if you look five different places you’ll come up with five different percentages. If you have to believe one, believe the highest one! Better yet, think of your case this way: you are an individual, you are different than everyone else. Your journey is going to be unique and cannot be represented by a number on a piece of paper. Move on.

Advocate, Advocate, Advocate

This one goes hand in hand with research. Once you’ve learned the facts, don’t be afraid to use them. If your medical team doesn’t want to answer your questions or hear your voice, get a new medical team. If you find they aren’t telling you everything, get a new medical team. If you feel they aren’t working hard enough for you, get a new medical team. If they aren’t spending enough time with you…you get it. No one is going to advocate as hard for you as you are for yourself. Unless you are physically unable to, find your voice and use it. If you are physically unable, find the strongest person you know with the biggest mouth and the most common sense and let them front your business for you.

Know Every Option

Especially when it comes to treatment, you must research and know every option. If you think that chemo and radiation are the only choices when it comes to killing cancer, you have a big surprise coming to you. Do yourself a tremendous favor and ask your oncology team about biomarker testing, as well as immunotherapy. If you have specific mutations in your tumors, you could be in line to receive targeted therapy, a pill, to potentially shrink your cancer or even eliminate it without destroying healthy cells. Or, you could receive immunotherapy, which trains your immune system to attack cancer cells. If you choose to believe that “Big Pharma” has made no advances with cancer treatment, think again. I’m receiving targeted therapy, and within a few days I saw a staggering change in my visible tumors. Thanks to my magic orange pills, I have been able to resume hiking and will soon start traveling again…three months after a diagnosis of advanced lung cancer!

Get a Second Opinion

And don’t go just anywhere, get it at a comprehensive cancer center, as seen on this map provided by National Comprehensive Cancer Network. These facilities have all the latest, cutting edge treatment and technology, as well as access to clinical trials, any and all of which have the potential to extend, or even save, your life. If you think that your local hospital is your only choice, or that traveling to one of these centers is too much of a burden, take it from me: the day my sisters drove me to Dana Farber Cancer Center in Boston, eighty miles from home, may turn out to be the most important day of my life. The second opinion turned my world around in ways I need a separate blog to describe. Particularly if you’re in an advanced stage of cancer, working with the best in the country must be an option.

I hope that what I have learned is of assistance to at least one person. The silver lining grows!

Oh, and one other thing: NEVER ask a person with lung cancer how long they smoked for. For many of us, that isn’t what caused our disease. THANKS!!

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Am I Cancer, or Am I Still Me?

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Ever since I was diagnosed with lung cancer two months ago I’ve been having a real identity crisis. Suddenly, I have this thing sticking out of my neck that probably nobody notices but me, yet I’m my harshest critic. It’s ugly, it’s embarrassing, it marks me as not being like everyone else. I’m a tumor. Who would want to hang around with me? I might be contagious. And truth be told, I’ve already been dumped by someone I thought was one of my best and closest friends. So, I must not be me anymore. I must be nothing more than a cancer growth.

I’ve started to have social anxiety. Me, the traveler that a few months ago was expounding on the wonders of Sri Lanka after an exciting summer trip. Me, the hiking lady. Me, the road trip queen. Going shopping is a challenge now. Everyone looks so happy and cancer free. Going for a walk is a great achievement. What if I feel weak or need to sit down? Driving is even more aggravating than it used to be, that petty nut behind me trying to push me to go faster, not knowing the challenges I’m facing. Get a life, will ya? I got cancer, screwball. You: In a big hurry to get to McDonald’s for dinner. Me: Figuring out how to save my own life. Beat that. Yeah, you’re seriously going to get the finger now. No questions asked.

I keep hearing the usual things.

“Everyone has problems.” Yes, I know. But not everyone has the problem of figuring out how to be here to see the calendar flip to 2021 in thirteen months, when the statistics say it isn’t going to happen. Not everyone has a devastating disease rendering them unable to do seventy-five percent of the things they love to do.

“You’re still you, and we love you!” I know that, too. I don’t blame my mindset on anyone but me and cancer. You wouldn’t feel any differently if the future you were working so hard toward and looking so forward to might not ever happen.

“You’re not being a warrior!” Listen, I can’t be a warrior one hundred percent of the time, and for a person who had the rug pulled out from underneath her several weeks ago, I think I’m doing pretty good, in spite of it all. By some small miracle I’m not severely depressed, even though my life has changed from hopping planes to hopping on hospital tables. From hiking poles to biopsy needles. From Southwestern road trips to doctor’s office road trips.

Am I working through it? Yes, I am. I realize that life is fleeting for everyone. It can end at any time. There’s no guarantees for anyone. It’s a crap shoot that we’re all destined to lose. Maybe, though, I’d rather not know when, how, or why it’s going to happen.

Lately, I’ve been listening closely to the words I put out to the world, and I’ve changed the way I’ve been doing it. Instead of bemoaning my situation, I’m thinking of it as a hurdle I have to get over to get back to what I want. Instead of assuming that I’m not going to reach my goals, I’ve put them back on the table. Retirement is still a possibility. Getting back to traveling is, too. Over the weekend I took my first hike in a month and a half. Was it as fun as it used to be? No. But I can’t expect miracles. I just have to chip away at the hole I’ve dug for myself since this all started.

Oh, wait, was I really me and not a tumor just a couple short months ago? Yes. Then maybe I’m not that far from where I need to be. I’ve begun treatment and am ready to see this ugly piece of costume jewelry start to shrink. Until then, it’s easily covered with any number of pretty scarves I used to wear just because I liked them. I’ve been lucky enough to be granted a pass on chemotherapy, so I won’t need to deal with the extra added burden of being stared at while trying to look fashionably bald. Go, me.

I’ve stepped up my daily fitness goals. Though they’re still a shadow of what they used to be, they’re still better than they were. I’ve made some new norms, since many of the old norms aren’t possible right now. And yes, I have five realistic goals set for 2020. Let’s not worry about 2021 quite yet.

Something has to make me happy. My life can’t be all about cancer. Thankfully, most of the poking and prodding is over now that treatment has started. And the endless phone calls have ceased, too. Though I have to admit, those annoyances kept me busy with little time to think about anything else.

Now, I have to think about getting me back and ceasing to be defined by a tumor. Maybe I’ll even figure out, like some cancer survivors do, that there’s a really good reason behind all this, as ironic as that sounds.

I want to believe there is. Just be patient with me while I find it.

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