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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.

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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My Supporting Cast

My beloved niece recently discovered my website and read many of my posts. What took her so long to find me is beside the point!  What really matters is that she did. She was especially interested in my autobiographical offerings.  So much so that she asked, “When are you going to write about your other family members?” To which I replied, “This is about me, not anyone else!” A few days later, when I wasn’t even thinking about it, I realized two things: that she wanted to be acknowledged as an important part of my life, and that she was absolutely right that I should be writing about someone besides myself! So many people have had their hands in shaping me. This post is for a few of them.

Being single and spending so much of life alone can make you feel like it’s all about you. But of course that’s not true, unless you have no family or friends! For a long time my sisters were both my family and my best friends. I often think that it took me so long to develop actual friendships because my sisters took care of all that for me. Then, once we started choosing paths that took us away from one another, a huge void was left that took many years to fill. Here’s a picture of us all together, in 2012, with the aforementioned niece in there, too:

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Front Row, Left to Right: Carol and Jeanne. Back Row, Left to Right: Amanda, Margo, Susan, Me, Marie

 

I’ve Got All My Sisters and Me

I’ve mentioned previously that I grew up with five sisters. I’m the youngest and got many great influences from them. I also had the benefit of spending time with them in different ways. Maybe that’s what made me a person of such diverse interests. Allow me to pay tribute to them, one by one.

My sister Marie gave me my first Beatles albums and taught me to love New York City and art museums. We’ve spent countless hours in the Big Apple and have seen many of the best exhibits. She has had my back without fault for decades. Through the years, my relationship with my oldest sister is the one that has endured the longest and strongest. Currently, she is one of two sisters that has not missed a single appointment of mine since I was diagnosed with cancer in October of 2019.

My sister Jeanne taught me to have compassion for people with disabilities. She has made me laugh so many times over the years, and has shown me the strength of the human spirit and the sheer will to live. Jeanne is a fighter who wants what she wants and won’t settle for anything less. We are soul sisters as well as blood sisters.

My sister Carol gave me the desire to travel and to be wild and free. I watched her lay down the example when I was young, and took mental notes so I could copy her when my turn came. Since September of 2019 she has been driving me here, there, and everywhere so that I can be the person I was before cancer tried to take over my life.

My sister Margo, who passed away from ovarian cancer in January of 2015, gave me the gift of music. While all my sisters influenced me in song, Margo was the one who turned me on to tunes from the 1970s. I consider that the foundation of the knowledge I used to pen my Girls of Glam Rock Series, and what cemented my love of the hair metal 80s and the grunge rock 90s. Every day that I’m stronger than cancer is not only lived for me, but for her, too, because she never had the chance to beat it.

My sister Susan gave me the gift of food and flowers. She is the real expert at cooking, baking, and making things grow and flourish, while I am just a humble follower. Several times a year she gives me delicious food to eat or something beautiful to grow. In fact, in 1984 she gave us the most precious bloom of all, my niece Amanda.

Nieces and Nephews

With all them sisters, you might think there would be tons of offspring! Not so. Three of us (Marie, Jeanne, and I) never had children. The other three took it easy. Carol and Susan had one each, Margo had twins and was done. I became an auntie to my nephew Ted, Carol’s son, when I was only five years old. Until then, I was the “baby.” As you can probably guess, I was really jealous of him for a few years! Mike and Eric, Margo’s fraternal twins, came along in 1981. Amanda was last, in 1984. We all spent a lot of time at the old homestead, Mom’s house.

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Mom loved her four grandchildren as much a her own kids. I’ve represented every family member mentioned in the surrounding pictures at least once.

Like families sometimes do, we eventually all went our own ways, sometimes too far away, not always happily. But if there’s a silver lining in hardship, it’s that it brings people together again. We’ve certainly had our share. And we’re holding it together.

 

 

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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