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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.

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.