Season of Struggle

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

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

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

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

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

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

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

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

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

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

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

Pass me my boots, please?

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

And even better, spring is one day closer.

A 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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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.

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.

 

 

Done Running Away from Christmas

 

I’ll be the first to admit that I’ve spent the past fifteen years of my life running away from home when the holidays roll around.

I’m not a fan of Christmas. It’s my least favorite holiday. I resent the commercialism, the attitudes, the lack of true spirit. Seeing people hanging up a bunch of blinking Christmas lights the day after Halloween, and walking through a department store full of annoying sparkling trees when I haven’t even eaten turkey yet gets under my skin. Fighting for parking spaces and running red lights in Walmart parking lot is about as tacky as it gets. The other day a woman was going through the aisles so fast that she smashed into my cart (hard!), smiled, and tossed a flippant “Excuse me!” over her shoulder before zooming on. My response? “Merry Christmas!” Was it sarcastic? Yup. But was I laughing? Sure was. Because more than ever this year, I have much more important things to think about.

Yeah, I have cancer. And I’m doing better than expected. But it still changes everything. Before cancer I had little tolerance for bull. After cancer I have zero tolerance for bull. Which might make you think that I have my head buried in the sand while I beg to be airlifted out of my misery. Well, surprise! Quite the contrary. I’ve found some semblance of peace, of wanting to do things differently. By jove, I’m done running.

If you’ve read any of my autobiographical blogs, you know that I come from a broken family. Holidays weren’t ever any fun, because someone was always complaining about someone else being late, or was outside smoking instead of opening presents. Oh, the hours spent on those cigarettes! (None of those hours were spent by me, but I’m the one with lung cancer. How about that.) Perhaps while all this was happening another family member would be missing a lost loved one. Or maybe a loved one a few miles away refused to come.  That’s the way it got after a while.

I did my time. Once I was old enough and had enough money to escape, why would I want to hang around?

One reason: Mom. Mom still needed someone to be there for her when the door only swung one way. But Mom left us fifteen years ago on the longest and greatest road trip of all. And that’s when I had a license to run. Not only at Christmas, but the rest of the year, too. And I happily renewed that license on a yearly basis.

Make no mistake about it: I did it because I wanted to. Running turned out to be fun and therapeutic. (The sunset shots above are from Fiji on Christmas Eve, 2015.) And I’m going to start running again as soon as my oncologist says I can. Just with a few differences, and one of them is that I’m staying home with my family and friends for my future Christmases. If I do any running it’s going to be to places where family and friends await me.

I can’t travel right now, but I can still fill up my calendar with things to do, and this year I’m making plans with the special people I want to spend time with. The fact that time is getting a little tight is a reason to smile, not grimace, because it means that I’m loving and being loved back. Hey, I kind of like this!

Sometimes, it takes a total life-changer to figure out things that maybe you should have altered long ago. I’ve been spending Christmas and New Years alone for more than a decade. A new tradition begins this year. Maybe I won’t have the excitement of seeing the coast of New Zealand for the first time out the airplane window, or be able to post a picture from the California desert with a clever twist on “Rocking Around the Christmas Tree” by rocking around the joshua tree instead, but I’ll be close at home and close at heart to those that love me most in the world and whom I love most in the world.

Everything in its time, right?

It’s time.

Merry Christmas to all, no matter where or with whom you choose to spend it.

 

Am I Cancer, or Am I Still Me?

Thinking Woman Banner

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

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

I keep hearing the usual things.

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

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

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

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

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

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

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

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

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

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

Reason

How We Road Tripped

 

 

 

With my recent cancer diagnosis, it’s kind of weird to be going back through old photo albums in order to write these autobiographical blogs. But I’m not giving up on them, anymore than I’m giving up on fighting cancer and winning! So let’s pick this story up where I left off: in 1993, when I learned to read maps and the road became my second home. Or more accurately, our second home, because my mom loved the road, too, even if she was always in conflict with leaving our stationary home.

Summer 1993. I get the big idea to do things a little differently. After mom and I cut our teeth with tour companies, and watched things we wanted to see go by out the bus window without being able to stop, we contacted our travel agent (gee, where have you heard that term lately!) and had her book us a cheap package to Las Vegas where we would rent a car and stay at the new Excalibur Hotel for seven nights. I pulled out my trusty road atlas and started planning. We could go to the Hoover Dam! And Death Valley! And Zion National Park! And the Grand Canyon! And…Jeez, could I really make this happen for us?

We’d also make a special stop at Death Valley Junction, a town that occupied a huge place in my current book, a long, handwritten saga of spoiled youth in Southern California. The Golden State was still my Promised Land, and no map made me hungrier than the one of Southern California. I found colorful names of cities and towns across the endearing area and assigned characters to the places. My favorite character of all hailed from Death Valley Junction, which I pictured to be something of a boom town. Small, but exciting. More on our discovery in a few.

Off we flew to Las Vegas and picked up our car. It was our first time in Sin City, and one of the only times I actually liked being there. I love Vegas now for only one reason: It’s a great jump off point to so many better places. Otherwise, I have little use for it, because I don’t care about gambling or the other activities the city offers. But back in 1993, Vegas was everything it was supposed to be. Given its proximity to California, even better.

In today’s world of “influencers” traveling the globe and showing their IG followers only the very best highlights of a grueling lifestyle, flying to Vegas and driving two hundred miles to Zion National Park must not seem like a big accomplishment. But to the me of 1993, a twenty-six-year-old small town girl with stars in her eyes, this was a heck of a big deal.  Did we make it everywhere we were supposed to go? Yes, indeed! But I’ll confess that we took a bus trip to Grand Canyon West, as it was easier to do it on an organized tour. This was long before glass bridges and expensive zip line packages. My favorite part of our trip had to be the Death Valley day. En route to what turned out to be one of my favorite national parks we stopped at Death Valley Junction and found not a boom town…but a ghost town! Another love was born. I’ve sought out as many as possible since then. Here’s a funny page from the magnetic album I made. Check out that cute Mustang!

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I had a dead end job at the time, and that’s what I went back to after this life-changing adventure. Friends got me into some local nightlife, but I never gave up on my pursuits of getting to other places. California wasn’t the only state where I found pleasing town names; I had them for every state. Places like Zook Spur, Iowa (another favorite!) and Summer Shade, Kentucky. Always whimsical, always good monikers to inspire stories that were flights of fancy. And always, always, places that made me yearn to get in a car and drive.

In 1994, I started to connect the dots between towns and to see how state highways, US highways, and freeways led to one another. I connected them so well that I came up with an enthusiastic endeavor to drive from Massachusetts to California and back again on a 9,400 mile road trip that would go through twenty-seven states, a dozen national parks and monuments, and to several other must-see spots in a time frame of forty-eight days. What did I expect my mom to say? A resounding “NO”! But Mom didn’t say no. Because we would have a once in a lifetime experience and be better people for it. Sure, Mom! Bless her heart. We set off in, are you ready for this, my 1990 IROC-Z convertible, all three of us total road trip virgins. Here’s one of my favorite unexpected moments on a trip that I still have not topped for length of time or mileage even twenty-five years later:

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No, you aren’t seeing things! That’s snow in July at Yellowstone National Park! And I was driving a lightweight Chevy Camaro convertible. Beat that, IG “influencers!”

After the excitement of the road, going back home to our tiny town was pretty tough. I understand a little bit of why musicians go so wild on concert tours then have a tough time readjusting to normal life again. And a pattern started to develop: just take any old job to make enough money to go on the next big adventure. The other idea that I got was that it was about time to get serious about moving to Los Angeles, my biggest dream. Like so many, I wanted to study acting and get into “the business.” I was already past my mid-twenties, so I couldn’t wait much longer. I wanted my mom to come with me, but because of my sister Jeanne she couldn’t even consider it. Jeanne needed her more than me. But as always, Mom swallowed her hurt and told me. “Go to California!”

Still, there was something in it for her: a four week one way road trip to drive my new Geo Tracker to Los Angeles, find a place to live, and fly back to pack up my less than worldly possessions. What turned into a “once in a lifetime experience” in 1994 was turning into much more than that and would continue to, even with Mom and me living on opposite coasts. This particular trip was 5,000 miles one way, and hit many more states that the first one didn’t, including what would become my favorite place on the globe, Southern Utah. Here we are at Monument Valley, circa 1995:

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How about that backdrop? It always reminds me of one of those fake pull-down things we used to pose in front of for school pictures!

While on this trip I took perhaps my favorite photo of Mom. Does anyone remember Highway 666 between Monticello, Utah and Gallup, New Mexico? It’s US 491 now. Ahh, them glory days of road trips!

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Notice how I had Mom in the devil holding the pitchfork pose. I was always putting her up to some bit of silliness, and she was such a good sport! Here’s another classic:

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Living in Southern California was a pretty intense experience for me. I was there for almost five years, and it was jam-packed full of exploration. If I had two days off from one of my many cruddy jobs I’d be on the road in the Tracker. Even one day would be sufficient. Once I drove 700 miles and was home the same evening! Usually, I was alone. But Mom came out several times and we took even more trips together, including a journey up the west coast to Seattle in 1997, and to Alaska the following year. My niece Amanda joined us one summer for fun closer to home, and I made my own trips back to the east coast.

Southern California was where I got my first taste of doing stuff that would freak people out. Notice me in one of the pictures at the top of this post getting ready to go hang gliding. Before that was sky diving!

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Yeah, like I said, quite a five years!

My next fabulous idea was to branch out to our second continent: Europe. Mom had three things on her Bucket List, and we did two of them on our 1999 European excursion: we went to the Running of the Bulls in Pamplona, Spain, and visited our homeland, Poland, where Mom paid tribute to her father at the Jasna Gora Monastery in Czestochowa, home of the famed Black Madonna. We also got to five other countries: Czech Republic, Slovakia, Germany, Austria, and Hungary. A month away from the comforts of home was a heck of a long time for Mom; she didn’t like the change in currencies or trying to keep up with the rest of the group we traveled with. By this time she already had a knee replacement and would be getting another one before long. I knew that the next time I went across the Atlantic she wouldn’t be along for the ride! But road trips were still of interest to us. We weren’t done with them yet!

By 2000, I was ready to go home. I felt like I did everything I wanted to do in L.A. and after studying acting for a couple of years and getting a bitter taste of “Hollywood,” wasn’t interested or impressed anymore. Mom was getting older, I missed her like crazy, and I wanted to spend the rest of her life with her. I did a solo road trip in the summer of 2000 to get back to Massachusetts and picked up more states toward my goal of visiting all fifty.

My timing, it turned out, was excellent. Mom and I still had four years together, and we made the most of them.

To be continued soon.

 

 

 

The Big Adventures of Little Lump

Cancer Banner

I INTERRUPT THIS EPISODE OF MY BEAUTIFUL LIFE TO BRING YOU THIS SPECIAL BULLETIN:

I HAVE CANCER

Whoa baby, what? Me, who travels around the country and the world hiking and enjoying the great outdoors and eating fruit and cheese and taking care of her body and not smoking and…gasp, gasp, gasp.

I HAVE LUNG CANCER

Just got a full diagnosis late last week. It could have been much, much worse. Like if it had spread to other major organs. It was caught quickly enough, but not quickly enough to be easy to get rid of. And so, a new adventure in the life of me begins. A journey I didn’t ask for that started just one month ago will end in a way that I cannot predict, but that I pray I can have some influence over with continuing to fight, be positive, be strong, and do what’s best for me.

The saga begins with Little Lump.

Little Lump appeared in the middle of my neck , near my clavicle, without me even knowing it was there. My first sign that something wasn’t quite right was when I was on my road trip this summer and I felt a strange pulling in my neck and upper chest that I had never felt before. Because I spend so much time with stuff strung and slung across my body, I just figured it was something rubbing against something else. When Little Lump started to show itself to the world I pointed it out to a few friends and family members, but none of them took much notice of it. I even went to the school nurse at the high school I teach at and she thought maybe it was a cyst. On September 12th, I took myself to my primary care doctor. She sent me for an X-ray immediately following my office visit. Two abnormalities showed on my chest x-ray. I was contacted right away and scheduled for a CT scan. Let the hell begin.

Pointer #1: If you find anything on your body that doesn’t belong there or doesn’t feel right to you, do not ignore it, even if someone tells you it’s “normal.”

While I anxiously awaited my CT scan, (and believe me, none of these things are ever scheduled fast enough!) my body started to fall apart. For a couple of days I was in incredible pain radiating from my neck, and had other disturbing symptoms. I was advised to go to the emergency room, where I ended up getting my CT scan, not only of my chest, but of my C spine, too. Compared to the saga of Little Lump, being told that I had arthritis and spine degeneration seemed like a minor inconvenience. And now Little Lump had a partner in crime: Little Lesion. Let the hell continue.

Pointer #2: Get serious when it’s time to get serious. I’m not saying to “prepare for the worst.” But do prepare for news that you don’t want to hear, because it’s a lot easier to deal with when you get it.

With some muscle relaxers and anti inflammatory medication prescriptions in hand, I had a week of relative peace until I followed up with my primary care doctor, who had boldly spearheaded this whole nightmare. She referred me to an oncologist (uh-oh!) not because she thought that I had cancer, but because the next step was to get a biopsy, and oncologists are the experts at that kind of stuff.

Okay. I’m going to an oncologist. Oncologists means cancer. Cancer!

Pointer #3: If you have a lump or abnormality and your care isn’t going similar to this, (x-ray, CT scan, specialist, biopsy) then advocate for yourself or get a new doctor.

Now, I have to take another break here and talk about the things that were going on around me while my life was turning into one big health crisis.

Everyone knew what was wrong with me (except, of course, for my team of doctors!) Everyone had advice. Some people made faces, others couldn’t look me in the eye, the immediate perception was that I had cancer and thus I was going to die. This was a hell of way to feel when I was already doing myself in. I just had to keep asking people to BE POSITIVE. I’m a firm believer in negative vibes causing negative events to happen. And for the record: unless you’re a medical professional with up to the minute knowledge of the world of medicine, you really have no business spouting fancy language. NONE.

Pointer #4: Don’t listen to Google doctors. Politely thank them as well meaning people and wait for opinions from your medical team.

My oncologist was skeptical about a cancer diagnosis, but was more concerned about Little Lesion than Little Lump, so I was scheduled for a biopsy of my lung. September 30th was the big day. After being warned about the possibility of air getting in my lung during the biopsy and having to spend the night in the hospital, my radiologist made the decision that Little Lump had to be biopsied after all, so the day went much easier. But at that point I pretty much knew I had THE BIG C. Believe me, when you hear the term PET SCAN, you can pretty much win any bet that you have cancer. With a cost of $5,000 or more for the ear-to-knee variety of the PET Scan, no insurance company is going to pay for this test without a serious diagnosis, and I’ve heard of people being turned down for them even if they have one. Luckily, I was not one of those people.

My pain-free peace came crashing down a couple of days after my biopsy, and I landed in the ER again. This was probably the worst part of my journey thus far, because I had a CT scan of my brain, and it was believed I had a brain tumor, until an MRI shot that theory down. I think that was the only time I cried since this whole thing started. For the first time since I was five years old and I had my tonsils out, I was admitted to the hospital to have more testing done but not, thankfully, to have emergency brain surgery! My oncologist visited me the following day and wanted me out of that bed immediately, as the PET Scan can only be done on an outpatient basis. Hey, I had to get my steps first!

 

The week between my discharge and having the scan then awaiting my diagnosis and prognosis was horrendous. I lost weight at an alarming rate, had awful nights, was afraid to be alone, couldn’t even drive! Me, of the 10,000 mile road trips! I was convinced I had cancer throughout my entire body, going on its very own horrible road trip.

Meanwhile, two of my sisters were (and are) bringing me everywhere and sleeping on my couch. Friends and coworkers were (and are) visiting, texting, messaging, emailing, supporting me on social media. People I don’t even know and have never heard of were (and are) hoping and wishing and praying for me. The response has been overwhelming, humbling.

Pointer #5: Gather the troops! And make sure every bit of attention and support you’re getting is POSITIVE.

Diagnosis/Prognosis day: October 10th. A real nail biter. The news wasn’t quite as grim as widespread cancer, but it isn’t exactly party central, either. I got the best thing possible: hope for a cure. My cancer has not spread to distant organs, but it has gone to one lymph node and, of course, Little Lump. All on the same side of the body.  Stage 3b lung cancer. Me! Healthy, happy ME!

The statistics are against me. But I’m not dealing in statistics anymore. I refuse to be a statistic. I’m just preparing for a damn good fight.

I’ve gained weight back. Took a leave from school to stay healthier. (Thank you, paid sick time!) Still have fitness goals, but obviously nothing like they were. Finding out everything I can to help me go in the right direction.

That’s all I have for now. Soon, I’ll have more appointments and treatments to write about. Until next time, I’ll leave you with a couple of things. First, the GoFundMe page I set up to help me fight this battle. Every cent of donations will be used accordingly. Second, a few pictures from my adventures this summer, not to be melancholy, but to remind myself (and the world) that I’m going to be this person again when I see the light at the end of the tunnel.

 

Cancer Bitch

Traveling With Mom

 

Jeez, I’m obviously not very good at keeping up with this autobiography stuff. Only two posts all year! Last time I promised that I wasn’t going to take so long to get to the next installment in my life story, a promise that I wasn’t able to keep.  But now that my blog is the focus of my writing life, I may just do better!

At any rate, in case you want to read the first two chapters in the life of me, here’s the story of my first ten years, and here’s the post about my teenage years after losing my beloved Dad.

And now, to continue…

So there I was, with two new loves, writing and maps, but with a family shattered by the death of my dad. My interests didn’t stop me from heading down some wrong paths for a few years, even as I obsessed over road atlases my mom would buy me and created wild stories in my head and on paper about characters who traveled, fell in love, and were a heck of a lot happier than me.  At a very young age I found temporary infatuations with drinking, smoking, and being a pothead. I’m not sorry about doing any of those things, because by the time I was eighteen I didn’t care about any of that anymore, but did care about my stories and my Rand McNally’s. Back then I didn’t think I had any chance to travel or live a life even close to the stories I was writing. As it turns out, I was wrong.

Like a lot of people, my travels started out in the obvious place: Disney World, of course! I was fifteen, it was 1982, and Epcot was just opening. My mom scrounged up enough money for us to go together. It was my first flight, and we also went to Sea World, Cypress Gardens, and Busch Gardens, on a guided tour. The travel bug was planted! I have my mother to thank for that. Here’s a real oldie of me from that trip, at Cypress Gardens. I was really in my Ugly Duckling phase in ’82!

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Florida was a dream, but to me the real prize was getting to California. It didn’t happen for five years after Florida, though we took some smaller trips. Between 1982 and 1992, Mom and I also made it to Amish Country, Washington, DC, New Orleans for Mardi Gras, Nova Scotia, Hawaii, Bermuda, Niagara Falls and Atlantic City, New Jersey. Not a bad take for two ladies who had really never been anywhere! I’ve included a picture from each trip. I have to stress here, too, that this wasn’t all about me, it was about Mom, too. Traveling was a new beginning for her. Not an easy or quick one, but eventually a welcome escape from the black hole her life seemed to be without Dad. She always said that Dad would have been behind her decision to take me places. I’ll just bet he would have been pleased to know that she was finally starting to get some satisfaction out of life again.

Mom never forgot her first and only love. But I fully believe she was finally able to let go of him more after fifteen years, ten years of which we were going places together.

I held down a full-time position in a local factory during most of these years. Our travel schedule wasn’t too wild yet, so I was able to squeeze the trips into paid vacations. That would get trickier as our travels got more sophisticated…and personalized.

While Mom and I were bonding ever closer and getting better at the travel thing, relations in our family were falling apart. Assumptions of favoritism were rampant, resentments cropped up that my sister, who is disabled, had to be taken care of while Mom was gone. Money problems were always at the forefront of every conflict. Things didn’t get any better, though everyone said they wanted Mom to enjoy life. In fact, things got steadily worse. I used to say that we weren’t a dysfunctional family, because that would indicate we were functioning, just not the right way. Hardly the case with us; we weren’t functioning at all. Because of this, Mom and I could never be completely happy traveling. She was filled with guilt for leaving her daughter, who required total care, in the hands of someone else, when she had always provided for her. Being far away from home without the option to get back quickly was tough for her. Sometimes she would cry and worry. My job was to cheer her up. It didn’t always work, but we still had plenty of good times.

We didn’t give up. Soon, traveling would get even more interesting. We’d leave the guided tours behind and start making our own fun.

That’s when I learned how to read those maps I was obsessing over. The United States and Canada were soon to be our oyster!