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COVID19: A Teacher’s Perspective

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Aside from writing my wildly popular blog (wink-wink), fighting Stage IV Lung Cancer, and continuing to figure out how to put my life back on track during the COVID19 crisis, I’m also a teacher. Yes, it’s my bread and butter, a major part of my existence, and I have my opinion on what direction this upcoming school year should be going.

Last week, my school system announced that we would start the new school year remotely and would reassess each new quarter. This news brought mostly cheers, with a smattering of jeers. Those same jeers have also been all over social media since March, many of them coming from parents, and aimed at teachers.

Listen mom and dad, I understand your duress. Now, understand mine.

For the purpose of safety, I was locked out of my classroom as well as my school in mid-March. That means that the only materials I had were whatever I had on my laptop, which suddenly became my forum for teaching my special ed students, all of whom are intellectually disabled and require any number of accommodations to be successful. Nearly one hundred percent of what I teach is on paper, with assistance from other live human beings, a Smartboard, laptop computers, and manipulatives. Suddenly, I and thousands of other teachers around the globe were thrust into a situation where we had none of our usual supplies to guide us in our pursuits to teach your children (and ours!) in the manner they deserve. Over the next three months we were told one thing, which we would start doing, only to have it change five minutes after we perfected it. We found new ways to do old things. They weren’t as good or as effective as the old tried and true way, but then again, when have any of us dealt with a pandemic that shut down the world? All due respect, but we didn’t reinvent the wheel, we made a new one, one that will come in very handy as we make our ways back to our mostly virtual classrooms.

I know parents have pressing woes to think about. Loss of jobs, childcare issues, health concerns. Here are just a few of the many woes of a teacher in September 2020.

Every single child that a teacher comes in contact with in the classroom, in the hall, at the buses, and in other common areas of a school building is a potential health threat. Multiply that by every single other individual a single child comes in contact with in or out of school and the risk balloons. Teachers know darn well that even though it’s a rule to wear a mask, school is for breaking rules. This never changed and it isn’t going to change now. The new “behavior” will be some kid who doesn’t want to wear a mask. How about kids with health issues? Teachers with health issues? Improper ventilation? Buildings not up to standards of cleanliness and sanitation?

Is your head spinning yet? Mine sure is. And those are just the tip of the iceberg. Did I mention that every single one of these things is also a risk to the health of your child…and you?

I’m not lazy, and get no particular thrill from making my paycheck sitting at my kitchen table. In fact, I love being in a room with my students engaged in face to face lessons. Love to see their hard work all over the walls and hear their excitement when they get a question right or learn something they didn’t know before. No, sitting in front of a computer is no match for that and it never will be. But the risks involved in putting hundreds of adults and children back under one roof is too overwhelming to even imagine. We’ve already seen the results of the rush to “get back to normal.” How many more examples do we need? I also understand the concerns about students falling behind. But what’s the alternative? Keeping a virus circulating instead of being realistic and following the rules until we can all be safe? Teachers writing wills and obituaries? (Yes, this is real!) Pretending that COVID19 is fake and invented for political purposes? See-through shower curtains between us and students? (Don’t even get me going on this one!)

The hopeful news is that we now have a starting point, due to the hard work of many dedicated professionals and savvy parents who worked together last spring. Now, we will be allowed into our rooms and buildings to get what we need to be more successful in this unprecedented time. No, it’s not going to be the same, at least not for the time being. But we will figure this out and in the end, being safe is better than being sorry. It’s the rule we’ve always been taught. Why change now?

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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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A Tale of Two Women

 

I’ve been wanting to write this post for a long time, but other ideas keep getting in the way. Now, with my mother’s birthday here, it’s the perfect time to celebrate her and my wonderful friend Barbara, whose passing was two years ago last week. I credit these two incredible women with being the most influential people in my life. Considering I’ve spent most of my life around women, this is a pretty big honor! Each of them helped to mold me into the person I am today, and for entirely different reasons. Yet, they both had the most precious gift of all for me: love. How I wish they were here to help me through cancer and COVID19, and so many other struggles! But their special gifts to me are so strong that they will last a lifetime, even without them near.

Mom

I’ve met a few people who’ve had poor relationships with their mothers, and have seen it first hand. I understand that not everyone is cut out to be a great nurturer, or even a good one. But mine, well, she was the best! Not only was she my mom, but she was my best friend, travel companion, and staunchest supporter of mostly everything I did. I have to say “mostly,” because Mom was not afraid to speak up if she didn’t like something! She was fiercely protective over her six daughters, and that didn’t always go over well. The interesting thing about Mom’s opinions, however, is that they were usually right!

Mom was a hard working, trustworthy, and emotional lady who was a member of the Greatest Generation and was honest to a fault. She was fiercely in love with my father, and when he suddenly passed away in 1977, Mom was forced to raise us by herself, pay for our family home, and somehow keep us going. Honestly, knowing what I know now, decades later, I don’t know how she did it. But she did, even though she had lost the love of her life and partner in everything. In my estimation, Mom needed a full fifteen years to get over my father. In the interim, she dragged her tired body to work everyday, paid bills, gave us the many shirts off her back that she had to wear without Dad, and cried frequently. When you’re young and you see your beloved mother an emotional wreck most days, you don’t really understand the underlying pain, and I’ll admit, I thought that she was a weak person because of what I witnessed. Not anymore! She battled through physical and familial pain, eventually finding a new love: traveling with me! Even that had its hardships for her, because it was so tough for her to leave her family. But she would somehow end up in the car, or on the airplane, or on the bus next to me.

Mom taught me the true value of love, the love of travel, to work hard for what I want. (Have you noticed how many times I’ve used the word love?) She left us for the big vacation in the sky in 2004, at the age of eighty. Here’s a shot from her last birthday, July 29, 2004:

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I wish I could report that her final birthday was spent surrounded by the love of her six daughters, but it wasn’t. Because of unbridgeable differences, what should have been the celebration of a major milestone was a quiet affair. I’ll never quite get over the sad fact that my dear mother never got what she really deserved, but endured a lot of what she didn’t. That has shaped me into someone that will not be walked on or taken advantage of.

In the end, I became her staunchest supporter and protector, and made a lot of enemies in my immediate family because I made myself a wall between her and them. The last several years of her life were tougher than they had to be, but it was love at work again: she never gave up on people who gave up on her. That’s one trait that I definitely didn’t get from Mom! I don’t give up easily on people who hurt me, but I do let them go.

Her death left a deeper sadness in me than cancer ever could. Her passing remains the worst thing that has ever happened to me, the most significant event of my life.

Special Note: The picture at the top of this post is Mom’s graduation picture, which hangs in my bedroom! She was very proud and talked often of this accomplishment.

Here’s our last traveling picture together, taken twenty years after the first:

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Barbara

Happiness was fleeting in my family. Any attempt at sustaining it would be shot down by someone’s negativity. So when I met my dear friend Barbara in the mid-eighties, when I was seventeen and she was a woman with a great deal of life experience, I couldn’t for the life of me figure out why she was so positive. In fact, she had such a positive attitude about life that my first impression was that she was “a fake!”

Barbara was my hairdresser. That’s how we met. She cut Mom’s hair now and then, too, so my two biggest influences met a handful of times! I’d gone to high school with one of her daughters, but it wasn’t her daughter that I had a thirty-plus year friendship with.

Like Mom, Barbara was a hard-working lady who shot straight from the hip. She was also independent and a successful business woman. We weren’t a likely combination, but let’s face it, when you’re sitting in that comfy chair for hours having your hair cut and colored and blown out, you have to talk about something! And Barbara and I talked about life. Her ability to see something good in everything and everyone started to have an effect on me. It was eye opening and mind opening! I realized one day: Barbara is happy. She made me want to be that way, too. But she taught me that happiness isn’t about walking around with a smile on your face, or doing good deeds to make yourself appear to be a decent person, or having a significant other to “make you whole.” Real happiness truly is a state of mind, of being, of thinking. And taking care of yourself and feeling good about yourself is no crime.

Barbara and I eventually became friends outside of her shop, meeting for lunch or breakfast or dinner, or at her condo and later, her home, for wine and conversation. Our time together was deep and meaningful, and I always came away having learned something important. Over the course of our friendship, Barbara lost all of her possessions in a fire, had two open heart surgeries, and found the love of her life in her 70s! Talk about a never say die attitude!

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Barbara gave those who loved her the feeling that she would live forever. But in 2018, while I was traveling, she succumbed to a virus. One of her daughters left me a message on my home phone that I didn’t get for over a week. I won’t ever forget standing in my kitchen at two in the morning, just back from yet another stupendous road trip, as I listened to it, and the emptiness I felt that this wonderful woman was gone from my life.

Her memorial service was held on what would have been Mom’s ninety-fourth birthday.

I oftentimes wonder how Mom and Barbara would feel about me fighting cancer. Unlike so many people I’ve dealt with over the past year, they would have been stuck like glue to my side! But part of me feels better that they don’t have to see me go through what I’ve dealt with since my diagnosis. Knowing that they’re in a better place and watching over me is probably better, as much as I miss them!

Everyone should be so lucky to have had such amazing people in their lives! If you don’t have them, find them!

Oh, one more thing…

HAPPY BIRTHDAY, MOM!

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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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What’s So Good About Quarantining?

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Howdy again! I guess it’s kind of weird to be writing about quarantining when the country is opening back up, but dare I say that this might not be over? Sure, we’re showing up in droves to book an outside table at our favorite restaurant, and gathering together in relief that this weird thing that has happened to the world has come to an end, but let’s face it, COVID19 is not over. I’m not sure that I’m ready to say that the world is never going to be the same again, but who knows.

What are you supposed to be doing right now? Me, I had a whole new world to deal with already before this virus came along and added another new type of weird to my life. Cancer came a callin’ for me in October of last year, and shortly after that a bit of a miracle occurred that put me back on the map of life. I’m supposed to be packing for a summer of fun, of getting back to the me that cancer tried to strip me of. Instead, I’m cancelling and rescheduling trips with my fingers crossed that I’ll be able to get some travel time in later this year. But I’m also figuring out new ways to enjoy life, because I have to. We all have to! And believe me, if I can find alternatives to the crazy awesome life I was leading a year ago, you can, too!

Here are some of the things that I’ve adopted to keep busy.

A Walk in the Woods

Hiking and walking is nothing new for me, but I’ve stepped up my game even more now that I have to be home so much. Truth is, “quarantining” for me has never meant being shut up in the house 24/7. I decided early on that I would not give up my time outside, as the likelihood of catching COVID19 on a hiking trail is slim to none. What I have been basically forced to do is to find new trails to explore as well as new parks and towns to check out. I’m so used to being in some exotic or amazing locale several times a year, that hiking in the same five or six nearby places in between trips worked. Not anymore! I needed to get creative, so as not to get bored. And guess what? I’ve found some excellent stuff! I always said that someday I was going to take a summer off from globetrotting and enjoy New England, and what do you know…it happened! (Of course, I kind of wanted to have a choice…) What hidden gems are in your backyard? Look around! I know they’re there!

Reading

If I could sit around and just read books all day, I might. Lately, I’m rereading old favorites and finding new obsessions to fly through. Now is the time to start that epic classic you’ve always wanted to conquer. Or, maybe indulge in something fluffy to take your mind off the craziness in the world. There’s always the option too, of learning something new that you’ve always wanted to know more about. Books have so many great functions!

Journaling

We’re living in historic times! Why not write about it? I’ve been filling notebooks for years, and I still get excited when I purchase my next one. I look for ones with fun covers on them, or interesting sayings. You could also buy a plain covered spiral and decorate it yourself. Purchase your favorite pens that write to your specifications and comfort. The Pentel RSVP Fine Point in black is my must have pen. Less than a buck apiece and they last a long time! (And by the way, I’m not making any moolah off that link!) While what you write inside the journal is the most important thing, take it from someone who has been doing this for forty years: what you use to do it is almost as crucial! There’s no worse killer of great journaling than pens that don’t work!

Art Projects

Folks, I’m no artist…believe me! But know what? I don’t care! I’m painting and creating my little heart out! Not everyone loves the message rock thing, but because I’m in the woods all the time, I find them magical, and have been making my own. As a teacher who has had her share of talented kids, I was at a loss with remote learning, so had to get my art fix without them. Rocks, hubcaps, flower pots, so many things around the house are up for beautifying with some cheap acrylic paints or cans of spray paint. Go ahead, find your inner Picasso!

Pictures

Do you still print pictures? Many people don’t, which I think is sad. Because we rely on our phones for so much, photo albums are getting a lot harder to find. Just had to order one from the ‘Zon because I couldn’t find any without going out of my way to a specialty store that may not even be open.  Nevertheless, now just may be the time to start printing your memories again. I’m convinced that paper pictures and albums are still the only trustworthy way we can save the special moments that we want to remember for a lifetime and pass on to future generations. Clark Color Labs allows you to upload images right from your computer, their developing costs are excellent, and their service is fast.

What are those things that you wanted to do “when you have time?” The “time” has arrived! And if the department store shelves are any indication of what Americans are doing with their extra hours, it can safely be said that we’re taking really good care of our cars, prettying up our homes, working in our yards, and spending a lot of time with family. Not such a bad thing, you think?

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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.

Caution: Name Change Ahead!

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Dear Friends,

Thank you so much for following my travels, for reading my autobiographical posts, for learning along with me on my journey to being a cancer survivor. Soon, I’ll be changing my name from Brenda K. Stone to Barb Lee. It’s a switch that I’ve been wanting to make for some time now, and I’ve finally decided to proceed. Barb Lee is close to my birth name, and I feel it’s time to be me again. Other than the name, not much else is going to change! But of course I understand if you no longer wish to follow me. I will miss you if you decide to go. If you decide to stick around, and I hope you will, here is what you can expect:

https://brendakstone.com will still work! I’ll keep it in use for those who are interested in the seven works of fiction I published under my pseudonym, Brenda K. Stone. There will still be a page on my website linked to Amazon and other retailers.

https://iambarblee.com will be my new primary URL. Under this name and URL I will continue to blog about my travels, my life, my cancer journey, and my personal philosophies. My memoir, Destination Life: My Cancer Road Trip, continues to grow, and my fingers are crossed that it will be a published book. In the near future I hope to put together a newsletter as well as a small store on my website with merchandise geared toward the survivor in your life! I’m also working on a presentation that I’ll use to move forward on the desire to be a motivational speaker, something I’ve always been interested in. Now that I have a pretty unique story to tell, it’s a better time than ever, and the more people I can help, the happier I’ll be. And I’ll never count out the possibility of writing fiction again under either name, (or both!) as it is one of my true loves!

Whew! I have a lot to do! I’d better get going!

Thank you again for your support and for your interest in my writing!

Not Quite Quarantining

Hey, how are ya’ll doing? Going cuckoo yet? Me, I was okay for the first few weeks, getting a little jittery now. Initially, quarantining was kind of fun, plus it gave me time to heal and rest after receiving pinpoint radiation to the tumor in my lung. Yeah, I was limping around for two weeks, but was staying active, walking about twenty-five miles a week while in treatment. All better from that now, but getting some cabin fever, and truth be told, I’m not even in one hundred percent female balls to the wall quarantine.

I live in Massachusetts, one of the states hardest hit by the pandemic, and I have a serious illness that makes me more likely to get COVID19, but I’m still not staying in all the time. Here’s why.

First of all, chances are nil that you’re going to get or pass the virus to anyone else if you obey social distancing outside. Folks, I’m no medical professional, but this is the truth. You aren’t going to get corona virus from a tree or a rock. And being inside everyday, all day, is an absolutely mind boggling thought, especially if you have to think about losing your job, how you’re going to be paying your bills, how to keep kids happy, etc. I’m lucky that I have not lost employment (I’m a teacher) and will continue to get paid as school systems around the country switch over to the uncharted territory of “remote learning” (cue eye roll emoji.) In between uploading lessons and talking to parents I’m walking almost daily, close to thirty-five miles a week most weeks. But I know a lot of people who aren’t even leaving the house, when a nice stroll or bike ride would relieve some worries, even if it’s only temporary. Please just remember that if you decide to turn to nature, be kind to those trees and rocks and animals and don’t take advantage of the beauty you see, even if you’re only seeing it because you can’t do what you usually do. Nature is what some people turn to all the time. I’m one of them. Save it for me, if not for your children. Throw your used masks and gloves in the trash, not on the ground! Thank you ahead of time.

The other reason that I’m not totally in quarantine is that, quite honestly, I can’t be because of the actions of others. Yes, I’m recovering from cancer and treatment and really should not be in public places because of my weakened immune system. However, people who could safely do their shopping in person are doing it online and blocking up all the time that elderly folks and compromised individuals like me need so we don’t have to go into enclosed places and rub elbows with a lot of others who could put us at extreme risk. Add to that the fact that so many Americans are not taking the threat seriously and flat out refuse to wear a mask and gloves and the risk goes up even more for us who need to be careful. For what its worth, I’m asking you that if you are in good health, please put on simple protective items and do your shopping in the store, thus leaving store pickup and delivery time slots for those who really need them. A couple of weeks ago I had to give up my bid to have my food delivered or readied for pick up because Walmart was booked solid for over a week. We all have to eat, and I couldn’t wait a week, so I made a special bag with masks and gloves that my sisters and I collected when we thought I would need to have chemo, and went to the store myself. So, the next time you see me, don’t tell me to stay home, okay? The truth is, I can’t. And maybe someone you love can’t either, for the same reason!

Don’t even get me going on toilet paper.

Jeez, I was supposed to be finishing up my radiation and getting back to traveling. We’re living in some pretty weird times. BUT–

Let’s all pull together and get through this and learn something from it and think of our fellow Americans and not just ourselves. We ALL have to do this, not just some of us. As of today, I know someone who died of this virus. It’s no joke, just ask the smarty that licked a toilet seat to be funny and ended up with the very illness he was mocking.

Fingers crossed that we can all soon get back to normal.

Sending best wishes.

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.