Hey, how are ya’ll doing? Going cuckoo yet? Me, I was okay for the first few weeks, getting a little jittery now. Initially, quarantining was kind of fun, plus it gave me time to heal and rest after receiving pinpoint radiation to the tumor in my lung. Yeah, I was limping around for two weeks, but was staying active, walking about twenty-five miles a week while in treatment. All better from that now, but getting some cabin fever, and truth be told, I’m not even in one hundred percent female balls to the wall quarantine.
I live in Massachusetts, one of the states hardest hit by the pandemic, and I have a serious illness that makes me more likely to get COVID19, but I’m still not staying in all the time. Here’s why.
First of all, chances are nil that you’re going to get or pass the virus to anyone else if you obey social distancing outside. Folks, I’m no medical professional, but this is the truth. You aren’t going to get corona virus from a tree or a rock. And being inside everyday, all day, is an absolutely mind boggling thought, especially if you have to think about losing your job, how you’re going to be paying your bills, how to keep kids happy, etc. I’m lucky that I have not lost employment (I’m a teacher) and will continue to get paid as school systems around the country switch over to the uncharted territory of “remote learning” (cue eye roll emoji.) In between uploading lessons and talking to parents I’m walking almost daily, close to thirty-five miles a week most weeks. But I know a lot of people who aren’t even leaving the house, when a nice stroll or bike ride would relieve some worries, even if it’s only temporary. Please just remember that if you decide to turn to nature, be kind to those trees and rocks and animals and don’t take advantage of the beauty you see, even if you’re only seeing it because you can’t do what you usually do. Nature is what some people turn to all the time. I’m one of them. Save it for me, if not for your children. Throw your used masks and gloves in the trash, not on the ground! Thank you ahead of time.
The other reason that I’m not totally in quarantine is that, quite honestly, I can’t be because of the actions of others. Yes, I’m recovering from cancer and treatment and really should not be in public places because of my weakened immune system. However, people who could safely do their shopping in person are doing it online and blocking up all the time that elderly folks and compromised individuals like me need so we don’t have to go into enclosed places and rub elbows with a lot of others who could put us at extreme risk. Add to that the fact that so many Americans are not taking the threat seriously and flat out refuse to wear a mask and gloves and the risk goes up even more for us who need to be careful. For what its worth, I’m asking you that if you are in good health, please put on simple protective items and do your shopping in the store, thus leaving store pickup and delivery time slots for those who really need them. A couple of weeks ago I had to give up my bid to have my food delivered or readied for pick up because Walmart was booked solid for over a week. We all have to eat, and I couldn’t wait a week, so I made a special bag with masks and gloves that my sisters and I collected when we thought I would need to have chemo, and went to the store myself. So, the next time you see me, don’t tell me to stay home, okay? The truth is, I can’t. And maybe someone you love can’t either, for the same reason!
Don’t even get me going on toilet paper.
Jeez, I was supposed to be finishing up my radiation and getting back to traveling. We’re living in some pretty weird times. BUT–
Let’s all pull together and get through this and learn something from it and think of our fellow Americans and not just ourselves. We ALL have to do this, not just some of us. As of today, I know someone who died of this virus. It’s no joke, just ask the smarty that licked a toilet seat to be funny and ended up with the very illness he was mocking.
Fingers crossed that we can all soon get back to normal.
We live in a world where the word “advocacy”gets thrown around a heck of a lot. Me, I use it all the time. Lately, even more. For years, I’ve advocated for my older sister, who is severely disabled, and for my students, who are to varying degrees, also disabled. Since September, I’ve had to add myself to the list of people I have to advocate for. Being diagnosed with cancer opened up a whole new world of advocacy. In all these forms, I’ve seen some pretty bad examples of what an advocate is and isn’t. Recently, I had the misfortune of being in a meeting for as student in which an advocate made it a point to stand up and yell at me. I was hardly her first victim. Her behavior prompted this blog post.
A couple of days ago I was witness to another poor example of advocacy. Now, I know I’m not supposed to be listening to the medical business of others. But it’s kind of hard not to when the “patient advocate” is getting hot under the collar in the reception area of a world famous comprehensive cancer center. It was all over an appointment with an oncologist that the young lady at the desk was trying unsuccessfully to help him with. Evidently, the patient in question wasn’t on the doctor’s appointment list. Who’s to blame for that? The receptionist? Probably not. But the “patient advocate” started kicking and screaming. “This is Stage IV lung cancer, a life or death situation!” he proclaimed, while the patient and his wife stood by, neither of them looking ready to keel over and die. I’m not making a joke here; I have Stage IV lung cancer,I know it’s no joke. What is a joke is that this “patient advocate” was getting himself in a twist and heightening the moment to a downright lie. Unfortunately, my dealings with advocates have been much the same as this. Furthermore, the “patient advocate” didn’t say anything that the patient himself couldn’t have said. Let’s be real here. Self-advocacy, if possible, is a lot more impressive.
I understand better than anyone that self-advocacy isn’t always possible. My sister is non-verbal, so I have to be her voice. Have I gotten into some tangles on her behalf? Yes, I have. Have I yelled at people? No. Have I lied for her? No. Have I been realistic about getting her what she needs? Yes, I have. And these are the real points of advocacy.Making respectful requests, being honest and open, and most of all, being realistic about what you’re asking for. I have not met too many professional advocates who stick by these rules.
Let’s go back to the student meeting. The advocate showed up wearing a dress with a severely plunging neckline, and bedroom slippers. The mother of the student in question didn’t say a word, but exhibited all sorts of nonverbal responses. Eye rolls and deep sighs were really big. When anyone tried to ask her a question or get an opinion, the advocate in bedroom slippers would cut in and say, “Mom is too upset to talk.” She was so upset, in fact, that she had to play with her cell phone while the advocate raised her voice, tried to make others in the meeting feel stupid, and made unrealistic demands for a student that misses at least half of the school year with questionable medical concerns. This folks, is not advocacy. It’s lunacy. Don’t get caught in this trap.
Here’s reality: not everyone with a serious disease is going to live. Not everyone with a serious disease is going to die. Not everyone with a life-threatening disease is ready to expire at any moment. (Take my word, cancer can be pretty boring at times!) Not every child is going to college. Not every child needs to go to college. Not every person with disabilities is capable of fulfilling lofty goals. Not everyone is going to get what they want out of life just because someone with a big mouth is speaking for them. Being the right kind of advocate is not about having a big mouth and thinking you can yell and accuse people of things they aren’t doing. Thing about it: when was the last time you got what you wanted by getting bent out of shape?
With that thought in mind, if you decide to hire an advocate for any purpose, for yourself or a loved one, remember: make respectful requests, be honest and open about your hoped for outcomes, and most of all, be realistic about what you’re asking for. Otherwise, be prepared to be disappointed.
And please, please, please, look under the desk. If you see bedroom slippers, run.
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.
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.
Yeah, I’m a cancer survivor, and yeah, I’m writing a book about my journey. Told here for the first time, the tome’s working title is “Destination Life: My Cancer Road Trip.” Though everyone has a story to tell whether they have cancer or not, I think that my tale is quite interesting, perhaps even a little over the top, and not one you’re going to hear that often. Some parts of it are typical for sure. Yes, my life was devastated. (Though really, is having your life devastated “typical?”) Yes, I was frightened that I was going to die. And yes, I had an incredible amount of stuff to learn. This is probably where the “typical” part of my journey ends. Because I’m one of those people that eventually took control of my care, had a fair amount of good luck in a bad luck situation, called out the prayer warriors, eliminated negativity, and saw things turn around quite dramatically. I know the wonders of modern medicine. I know the power of Big Pharma. But I had to go through some poop to get to the right place.
Before all that happened, I was just a human being flailing with the thought that my life would never be the same again, and maybe I wouldn’t even have a life to look forward to:
It’s still warm in New England, and foliage season is approaching. Autumn is not my favorite time of the year as it is for many, but definitely a beautiful time, and one that I always enjoy hiking in. The leaves are changing colors, and so is the rest of my world. As my sister drives us home the “C” word starts to set in. I look at other people out the window and they appear so casual, so carefree, no worries in the world. They don’t have to think about cancer, but I do. And I come to understand something again, that I realized in 2004 after my mom passed: the world still goes on. Life goes on, even as you’re suffering, even as your life or your world has suddenly been dealt a devastating blow. The world doesn’t care. It has to keep turning for everyone else. It is one of the many sad facts of humanity.
As I write this post, I’m stronger than ever in many ways, but I had to find my wings to fly through my new life. It wasn’t always easy or positive. The ground I was walking on was shaky, uncertain. The fear was real, and debilitating. For a while, the news was getting worse. Here’s an excerpt from one of my darkest days:
A lymph node on the right side of the base of my neck is on the rise. Supposedly it’s on the PET scan, but wait…wrong. The one on the PET is in the lung, a hilar node. The neck node is unaccounted for. I discover it when I scratch my shoulder one night, while talking to my sister on the couch. So now there’s four areas.
Dr. L finds an abnormality in the back of my throat and matches it up on the scan. Now we have to find out what these two new discoveries are. The possibility of two different cancers is floating around. Could I really be that unlucky? Head and neck cancer, and lung cancer, too? The cure word gets tossed aside, the waters muddied. The rug gets pulled out from under me again.
More questions without answers are swirling around. This is an all-time low point. Two more biopsies are on the near horizon. The throat node requires a trip to another specialist, an ear, nose, and throat (ENT) doctor.
Treatment looms too far ahead as cancer grows inside me, packing its bags for an adventurous road trip.
I wasn’t totally serious about this book when I sat down to type it from the original journal I composed in longhand. But I’m committed to it now, as hard as it is to relive such heartrending moments so soon after they happened. Yes, this was only four months ago. Oh, how far I’ve come since then!
I don’t know how this particular book will end, since my new life is still unfolding in the most interesting of ways. Nor do I know when it will be done. I’m not on a schedule; I’m in no hurry. But I’m pretty sure that it won’t be the only book of its kind. Thinking it might be a series. I have a lot to say, and I’ve always wanted to write nonfiction. Here’s my chance!
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:
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.
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.
Happy New Year! 2020 has had a much better start for me than I thought it would. Getting a cancer diagnosisat 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 helland 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 Societyand 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!!
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?
Merry Christmas to all, no matter where or with whom you choose to spend it.
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 Trailbecame 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!
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!
Ever since I was diagnosed with lung cancertwo 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 Lankaafter 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.
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!
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:
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:
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!
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:
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!
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.