Blog

What You Must Do After a Cancer Diagnosis

oncologyBanner

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

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

Gather the Troops

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

Do Your Research

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

Don’t Place Too Much On Statistics

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

Advocate, Advocate, Advocate

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

Know Every Option

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

Get a Second Opinion

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

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

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

awareness-ribbons-banner-051616

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.

 

Two Great Alternatives Outside Yosemite

One of my close friends and travel companions was recently in the Lake Tahoe area and wanted to do some time at Yosemite. I gave her a couple of alternatives nearby, in case the steep road up to the Tioga Pass was closed. Upon returning, she described Yosemite in two words, the first one being “cluster” and the other starting with “f” and having four choice letters. The sentence went something like this: “Yosemite was a cluster f*** of people.”

Yeah, been there, done that. In my bid to hike all sixty United States national parks, Yosemite was one of the first I eliminated. In fact, Yosemite was the first one I ever visited, way back in 1987 when I was a newbie traveler. Don’t get me wrong, I love the place. Ye olde Yosemite holds a lot of nostalgia for me, as my mom and I discovered it together, and revisited it a couple of times afterward. But it’s not the first park I would run back to, as I hiked it for several days, and oh yeah, there’s that people problem!  (Thanks, John Muir!) What I would do again, however, is hit my two favorite sites in close proximity to the park. If you’re in the area, don’t miss them! And you can see them both in a long day if you only have one.

Mono Lake & the South Tufa Trail

Located on US 395 just north of the east entrance of Yosemite, Mono Lake was nothing more than a crystal blue alpine persuasion the first several times I saw it. It wasn’t until a decade or more later that I learned that the super-salty body of water actually had a trail leading to some other worldly formations of “tufa” made from calcium carbonate. Thus, the South Tufa Trail became one of my favorite trails anywhere. And like so many other incredible walks in the American West, anyone can do it. It’s short, flat, and spectacular.

A brief gravel road leads down to the lake, and a small parking fee is charged once you’re there. Mono Lake is one of those places where the sky makes all the difference. As you can see from my pictures, the white puffy clouds were on my side the day I stopped by.

Like anywhere a stone’s throw from a world famous national park, don’t expect to have the place to yourself. But most of the crowd will be at Yosemite. Promise.

Bodie Ghost Town

Anyone who knows their ghost towns knows that it doesn’t get much better than Bodie State Historical Park. To get there from Mono Lake, continue north on US 395 approximately twenty miles to California 270 east, just south of Bridgeport. Bodie is a fair weather destination; don’t underestimate the power of the three-mile climbing dirt road at the end of 270. The town sits at 8,375 feet above sea level, and you will feel it in your chest as you walk the dusty streets.

If you’re looking for an amusement park, you’re in the wrong place. If you’re looking for a genuine ghost town, you’re in for a real treat. Bodie is kept in what is called a “state of arrested decay,” meaning that it’s preserved but not restored.

You aren’t going to see any slick mining rides or “old west” shootouts. What you are going to see is the fascinating remnants of a once-vibrant gold mining town that at its peak was home to 10,000 residents and offered up as many as sixty-five saloons and a busy red light district. Bodie also has an amazing cemetery. If you love a good boneyard, there isn’t anything that quite compares to a ghost town burial ground. Don’t forget to check out the final resting place of Rosa May, the beloved madame of Bodie, who even in death is still bringing in the cash!

IMG_3801

After you’re done with your walk, don’t forget to marvel at the simple beauty of the landscape. And don’t forget to thank me for a day away from the crowds at Yosemite!

 

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!

IMG_20191024_161507814

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:

IMG_20191024_162048634

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:

IMG_20191024_162503178

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!

IMG_20191024_162414274

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:

IMG_20191024_162843543

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!

IMG_20191024_163521579

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!

IMG_20190929_165931226

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!