Happy Cancerversary to Me!

Since there aren’t that many people out there who want to celebrate my life and my journey with me, I’m just going to do it myself! Two years ago on this day, I was formally diagnosed with non small cell lung cancer. Of course the beast has been in my body for longer than two years, but it was confirmed on October 8, 2019, so this is the date I will acknowledge. My last two posts have recounted my trail of surviving the deadliest cancer out there. You can read them here and here.

I was on a train bound for New York City’s Penn Station last weekend when I started writing down ideas for this post, and decided that I would share my thoughts in two categories: What I’ve Learned, and What I’ve Accomplished, in the past two year. A few years before my diagnosis I was told by someone that I use the word “I” much too much, but screw him. I’ll be using it ad nauseam here to make my point, and I think I’ve earned it!

Ready?

What I’ve Learned

  • I’ve learned more about my strength and spirit than I’ve ever wanted to know.
  • I’ve learned more about cancer than I’ve ever wanted to know.
  • I’ve learned more about people than I’ve ever wanted to know.
  • I’ve learned that some people like you better when you’re down.
  • I’ve learned that some people are never going to like you, up or down.
  • I’ve learned that some people don’t have compassion unless something is happening to them.
  • I’ve learned that people throw the word “love” around but don’t know what it means.
  • I’ve learned that “love” really needs to mean more than just a word.
  • I’ve learned who my true supporters are.
  • I’ve learned that to survive, I had to let go of those who aren’t.
  • I’ve learned that people will crush you in the worst of times.
  • I’ve learned to keep going in spite of them.
  • I’ve learned that me with cancer and me without cancer aren’t that different.
  • I’ve learned to live my life in mostly the same way even though I have cancer.
  • I’ve learned that terms like “fighter” and “warrior” only serve to move you away from being YOU.
  • I’ve learned to reject those terms.
  • I’ve learned that for many people, my illness is over, even if it will never be over for me.
  • I’ve learned not to underestimate the power of cancer.
  • I’ve learned not to underestimate the power of ME.
  • I’ve learned that it’s okay to let my “strong” guard down once I shut the door on the world outside.
  • I’ve learned that the world keeps turning, even though I have cancer.
  • I’ve learned that my world keeps turning, even though I have cancer.
  • I’ve learned that tomorrow isn’t guaranteed for anyone.
  • I’ve learned that my life still matters, even if I have cancer.

What I’ve Accomplished

  • I’ve lived through cancer in my lung, neck, sternum, hips, pancreas, stomach, and chest wall.
  • I’ve been on four road trips.
  • I’ve written a 42,000 word book about my cancer journey. (Unpublished)
  • I’ve begun another book about a woman living with ALS.
  • I’ve written 45 blog posts.
  • I’ve walked/hiked 3,350 miles. (Not a misprint.)
  • I’ve lost me.
  • I’ve found me again.
  • I’ve continued my life in full for two years, with cancer.
  • I’ve ridden 110 miles on my $100 bike.
  • I’ve revisited 18 states.
  • I’ve booked my first trip out of the country since summer of 2019.
  • I’ve rebooked and gone on two of the three trips I had to cancel for cancer.
  • I’ve continued my teaching career through COVID19 and cancer.
  • I leased a brand new car but kept my old one!
  • I was debt free for a year.
  • I’ve used up two of my nine lives on cancer.
  • I’ve found solace in art, but am no great artist!
  • I’ve explored New England more intensely than ever.
  • I’ve found friendships with a few of the greatest people anyone could possibly ask for.
  • I’ve left friendships that weren’t productive.
  • I’ve been blessed with the constant love of three family members.
  • I’ve left family relationships that weren’t productive.
  • I’ve requested no sympathy.
  • I’ve held fast to my dreams for the future.
  • I’ve tried to help others with cancer to do the right thing.
  • I’ve survived and thrived because I LOVE LIFE.

I rest my case as I look toward the future.

Coming Clean, Round 2

Me at 53, after cancer, Round 1

It’s inching closer, my cancerversary! Less than a week away, when this goes public. I don’t spend a lot of time thinking about my journey anymore, but most people don’t know all the crazy details, so I’m letting them be known for anyone who cares to read. Last week I recounted my first “round” of cancer and treatment. You can read the post here. All involved were hoping for a knockout punch that would last a lifetime, but it was not to be. After radiation to my lung and neck, and a year of targeted therapy, I noticed a small bump on my right flank. My oncologist sent me to a dermatologist in November of 2020. The skin guy did a biopsy in the office, and as I awaited results I headed down to South Carolina to see my niece. Surrounded by love from her and her three adorable dogs, we decorated her Christmas tree, went bowling, and shopped for homemade soap at a local farm. A huge celebration occurred when the results came through: No new cancer! The bump should go away. Life went on happily!

If the bump had gone away and life had gone on happily I probably wouldn’t be writing this post. The next month, just a few days after my 54th birthday, I went to Boston for a PET scan, with my fingers crossed that I would get the coveted news that I had No Evidence of Disease (NED), a designation that I had cut so close during the summer. I wasn’t feeling well, but I still had hope. Feeling crappy had become a way of life even before cancer, and after treatment it was even more so. Fatigue and exhaustion would hit me and stay for a week or more, but I’d keep pushing through to feeling better. By this time I had put my life back on track fully, I was on pace to shatter my yearly mileage record for walking and hiking, road trips were happening again, and I had great hopes for the future.

Which made the results of my PET scan all the more shattering: I had more cancer. That bump on my back meant something. It had not gone away, and was now lighting up as cancer on the scan. But there was worse news than that, as cancer had also infiltrated several other places, including both my hip muscles, my upper stomach, and worst of all, my pancreas. I won’t soon forget receiving this news in the cold of COVID19 December, all alone in Boston as the world got dark, and someone who is supposed to love me making it even darker. That last part is another story in and of itself, and at this point I’m over it. From here forward I’ll keep this post about cancer.

Now what? I was surely going to die, with cancer happily invading my space again. I would have to switch medications. My oncologist’s suggestion was a clinical trial for a brand new tyrosine kinase inhibitor, or TKI, like the one I was currently on, but considered a”next generation” drug, called Repotrectinib. Before I could go on it I had to endure a new series of scans and blood tests, and a fresh biopsy to be sure that the new metastasis was the same as the old one. I also went back to South Carolina to dog-sit my favorites canines while my niece went to Florida. Perhaps it would be my last trip there.

I had so much new cancer I was having trouble keeping track of it, so I made this fancy diagram:

My rendition of me, loaded with new cancer

Cute, isn’t it? Yeah, unless it’s you.

I waited a tense month for the drug company to accept me into the clinical trial. My cancer was growing, making the likelihood of death all the more certain if the new wonder pill didn’t work. The tumor on my back continued to grow and topped off at 3.3 x 3.0 centimeters before I started treatment. Not only was it disgusting to look at (this one was actually like a skin tumor and growing on the outside, unlike the tumors in my neck, which were under the skin,) but it was also bleeding and getting in the way of life, because if it rubbed against anything it would gush blood. I had to keep it covered 24/7 and couldn’t sleep on my right side. A few times I had to cancel plans with friends because I had to take care of my tumor. Yay, me! (Eye roll.)

By the time I started treatment in late January of 2021, all my tumors had grown. In centimeters, my pancreatic lesion was 2.1 x 2.0. Left hip: 3.2 x 1.9. Stomach: 2.7 x 2.1. And tipping the scales at 8.4 x 3.8, the right hip tumor. They had gained considerable steam in a matter of a month. And that bleeding tumor in my side? Any information that I found on lung cancer metastasis to soft tissue was extremely grim. I was literally dying for treatment. Again.

Somehow, I kept going. Shout outs to several friends and a few family members for sticking with me and helping me through. Remote learning saved my finances. I got an accommodation from my school system to teach from home until the end of the school year in June of 2021. The tumor on my back, as disgusting as it was, turned out to be a creepy blessing, as I was able to watch it shrink down to nearly nothing and knew the medication was working. Within six weeks I didn’t need to cover it any longer, and it stopped bleeding.

I kept hiking and walking. Went back to South Carolina in February, revisited my beloved Southern Utah in April, took two fantastic road trips this past summer.

I get scanned every eight weeks on the clinical trial. I don’t feel fabulous most of the time, and am currently sore as hell and have weakness in my legs, but hey, the bottom line is that I’m still able to do everything I love. As long as my luck holds out, I’ll be heading to Costa Rica for Christmas!

Let this sink in: Thus far, I have survived cancer in my lung, neck, hips, pancreas, flank, and stomach. Last scan, in early September, my hips and pancreas were clear, with the stomach and flank tumors significantly reduced. Still hoping for NED!

Sigh.

And what a two years it has been! Bring on the cancerversary!

10-2-21, Roosevelt Island, New York City

Coming Clean, Round 1

Here we are again, heading into the autumn season. At one time, this is when I’d be mourning summer, reminiscing about the road trips I’d just taken, and dreaming of the next years’s road trips. Almost unbelievably, I’m still doing all that, but for the past two years, September is also when I’m faced with memories of the beginning of my cancer journey. Yes, I’m coming up on my second cancerversary with Stage IV Lung Cancer, a diagnosis that few are lucky enough to survive. So I have to be prepared when I look at my Facebook memories, because chances are 100% that I’ll be seeing myself with a tumor growing in my sternum, the first sign that there was something not completely right in my world.

To “celebrate” the upcoming anniversary of my diagnosis, I will “come clean” with the many details of my journey of staying one step ahead of death, sometimes not even that. And because I know that I’ll need more than one post, I’m calling this Round 1.

I saw the lump in my sternum in late August of 2019. Felt it before then, a strange pulling feeling in my neck. And I was exhausted. But the summer was great. I had amazing road trips in the southern U.S. and southwestern U.S., and an incredible journey to Sri Lanka. Other than being really tired at the end of the day, I had no other sign of what was coming. I hiked hundreds of miles a month, and kept up my crazy schedule otherwise. Frequently I proclaimed myself a “lucky girl” for the life I was leading.

The 2019-2020 school year started well, my sixteenth year as a Special Ed teacher. Two weeks in, however, I began to feel intense pain in my neck and head, so bad that one day I had to leave and go to the ER. I also had the school nurse look at the lump in my sternum. She measured it at one centimeter and suggested I get it checked out. I didn’t pay much attention to it until I started to ache from the waist up, so badly I couldn’t think straight.

Thus started a string of doctor appointments, ER visits, and scans. An X-ray showed something happening in my lung. A CT scan was next. I sat on pins and needles while awaiting results, trying to function correctly while trying to convince myself that my life wasn’t falling apart. It couldn’t! I was a lucky girl, traveling and doing so many things I love to do!

My primary care doctor soon uttered the word “oncologist,” not because she thought I had cancer, but because she wanted to be sure I didn’t have cancer. And so, I entered the world of “the Big C”and oncology, hopefully for only one visit. That was not to be. After an overnight hospital visit, a series of scans including the all-powerful (and expensive) PET scan, and a ton of misinformation, I was told in one of my now-frequent ER visits, that I indeed had cancer. An “incidental finding” from a brain MRI also showed a tiny tumor, usually benign, called a meningioma. I have not revealed this until now, because I feared brain cancer. Over the past two years my little buddy has proven thus far to be unchanged and something that has likely been there for some time. Meningiomas are actually quite common. But at the time, it was more devastating news that would get worse before it would get better.

Two draining months went by as I ran from doctor to surgeon to specialist to radiologist and back to oncologist. The road trip I never wanted to take. The news was grim: Stage 3b non small cell lung cancer, (NSCLC) with radiation and chemotherapy in my foreseeable future. My team of local oncologist and radiation oncologist were hoping for “cure” but also sent out the biopsy tissue from my tumors for what is called biomarker testing, which could change the entire course of my treatment, if I was “lucky” enough to have one of the eight biomarkers in lung cancer. It could be the difference between taking a pill to kill cancer (what???!!!) by targeting a mutation in my tumors, or going through the common course of treatment, chemo and radiation. While we awaited results, a node on the side of my neck started to grow, and the tumors in my sternum and lung continued to get larger. I also had to have a biopsy on a growth in my throat that turned out to be benign, but that held up treatment by a couple of weeks. My dentist even chimed in with the possibility of a tumor in my gum. All arrows seemed to be pointing to death. Metastatic cancer. Everywhere!

The truth was that I had active and growing cancer in three places: lung, sternum, and neck node. The local team stuck with the 3b designation. Behind the scenes, I was considering a trip into Boston, about 75 miles from my Western Massachusetts home, or at least getting an online second opinion. Dana-Farber Cancer Institute is consistently in the top five cancer centers in the country, and friends were telling me that I needed to go there. Admittedly, I dragged my feet, because I thought I was doing okay with the local hospital. But I had the good sense to talk to my oncologist about it, who sent a referral. His staff set up an appointment for me, which was after I had already started radiation, but was the very day before I was set to start chemo. How’s that for timing?

Starting treatment was at least going in the right direction, or so it seemed, but the worst news of all came through: seven out of eight biomarkers came through as negative, so there would be no pills for me. So much for being a “lucky girl.” Bring on the chemo!

November 13, 2019 is a day that lives in infamy for me, for it’s the day that I went to Boston for my appointment at Dana-Farber. It’s the day that I found out that I was in Stage IV, but that I indeed had a biomarker, the eighth one, ROS1, and that I could stop radiation, cancel chemo, and swallow a pill! Two weeks later I started a drug called Rozlytrek (entrectinib) that by some miracle shrank all three of my tumors. The one in my sternum went away altogether. The other two shrank enough that I could have consolidative radiation therapy, that had the possible promise of a long life restored!

For most of 2020, things were moving steadily in that direction, even through COVID19. I had radiation on my lung tumor, and later, my neck node was radiated. Whew, what a cancer ride! This looked like the end of it for me! Had I ever lucked out! Imagine, possibly cured of Stage IV Lung Cancer!

I had lucked out. But it wasn’t over. I wasn’t quite that lucky.

Before I could even enjoy winning round one, round two was ready to take me to the mat.

Me, one year after diagnosis, road tripping between rounds one and two

Rediscovering You

Here’s a secret: when you first start blogging it’s pretty tough to come up with subjects to write about. Then you get a little bit of leverage, a dash of inspiration, and maybe even a crappy disease, and suddenly, you’re golden! You have a whole list of ideas! That’s what happened to me. It’s for this reason that I’ll follow up my last blog post immediately with the final point of my advice for living successfully with a chronic illness. I have many other subjects to get to and don’t want this final thought to get buried in a bunch of other posts.

Listen, I’d really rather be writing about traveling and writing books, which is what I intended this blog to be about when I first put it together. Thankfully I can still talk about that stuff, but I’ve also been granted this opportunity to help others with my success at battling a chronic disease, so I’m going to take it. It’s certainly helpful to think this way: that this new struggle I’m dealing with is an opportunity, not just a burden. You will need to think this way frequently. To say “always” is not realistic. You can’t do anything always. If you can do it eighty percent of the time you’ll be doing darn good.

To review, my ideas for continuing to thrive with a chronic disease are:

Get the best medical care possible

Seek no sympathy

Find new ways to do what you love

Find new things to love

Surround yourself with positivity

And the final point, which I’ll be expanding on today, is:

Don’t let your illness define you

Since announcing that I have cancer I have been labeled as a “warrior,” an ass kicker, and a bitch, (though that’s not a new designation!) and have been glorified, mourned, pitied, bad mouthed, and name-called. Everyone knows what I am, has a character for me to play. Though many of these identities are well meant, what no one really accepts is that the only identity I want to identify with is ME. When you are first diagnosed with a serious illness the processes that you have to go through to continue to function and/or stay alive can strip you of who you are and who you used to be, even though you may look the same on the outside. I consider myself pretty lucky as far as the cancer treatment I’ve received is concerned, but I’ve still had to deal with the biopsies, scans, blood tests, and procedures that leave me bruised temporarily, and sometimes scarred for life. Additionally, through all these the specter of early, sudden, and impending death has bore down on me more often than not. All the while, the biggest struggle has been to find myself again while others label me as something and someone else. No one realizes that while they indicate that I am now somehow “different,” I just want to be the same old me, though with an extra full plate to deal with. It’s because of this that I’ve stopped sharing a lot of my information, though I plan to”come clean” in my next blog posts, however many it may take. (Yeah, maybe more than one. I’ve withheld a lot of gory details.)

My two year “cancerversary” is coming up next month. In the last twenty-three months of my life I’ve been told that I must be “miserable.” (I’m not.) Some have treated me as if nothing is wrong. (Shame on them.) I’ve been counted out. (Sorry to disappoint you. Wait, no I’m not.) Worst of all, some like me better now that I’m “tainted” in their eyes. (They don’t know that I’m still happier than they’ll ever be.) In the pursuit of finding ME again, I’ve had to dodge a hell of a lot of stupidity, hurt, and crisis. Nevertheless, these days I’m hitting ME again pretty closely and sometimes even getting a break from being Cancer Girl. I guess I won’t ever be the same carefree person I was before, but when I think this way I realize: Everyone has their crosses to bear. If I didn’t have cancer I’d be worried about getting old, losing my figure, or not having enough money, things I don’t even think about now. Getting old will be a privilege. Bring it on! My body still looks pretty good, all things considered. And I’ll always figure out how to survive monetarily. Hell, I’ve survived Stage IV lung cancer!

Am I proud of that last point? You bet your bottom dollar I am. Of all the things I’ve been called, “survivor” is the one I accept. On MY terms. Find YOUR terms, and stick with them. Find yourself again, accept the differences, embrace who you are and how much BETTER you are now that you have overcome the disruption of your life.

In the meantime, please enjoy the photos of ME still being ME.

Positively Positivity

Whew! I was really hoping to be back here long before now, but guess what? I recently returned to face to face teaching, with students in the same room for the first time in over a year. After working remotely followed by an accommodation due to a serious underlying illness (advanced lung cancer…yikes!) for the entire 2020-2021 school year, I’m in front of the kids again for real. Masks are required for everyone, so it isn’t quite the same, but I have to admit that it’s been a mostly positive experience for me to be back in the routine I was in for many years before my cancer diagnosis. In fact, I feel quite normal, and can even sometimes forget that I have a deadly disease. Add last week’s great scans to that equation and it makes for some happy times. But heck, what a struggle to get here, and believe me, I’d be a fool to think that it’s going to last. Which doesn’t mean I’m not going to enjoy the break until the next big cancer event, and that I won’t hope and pray that I have lots of time before that happens.

How did I get to this more comfortable place?

I got (and continue to get) the best medical care possible.

I asked for no sympathy.

I found new ways to do what I love.

I found new things to love.

I surrounded myself with positivity.

I didn’t (and don’t) let my illness define me.

Please click the links above to read previous posts on how I live successfully with a chronic illness that initially spun my world around and still continues to at the drop of a hat.

In this post, I will discuss point number five, surround yourself with positivity

Let me put it right out there: you don’t need people throwing around their own special brand of negativity when you’re already dealing with more heartache than most humans can handle. Do you know what it’s like to have a needle in your arm and lie in a tight, noisy machine while it scans your brain? Then to get out of that machine and get in a different one to scan most of the rest of your body? How about radiation? Ever had it? Or, think about what it might be like when you just want to live your life but you can’t because you have to do things to save your life. Now, add a negative person or two to that and aren’t you feeling extra super sucky? Yeah, I’ve been there, done that.

So, what do you do? The solution is simple to say, difficult to accomplish. Complicated, because the negative individual is oftentimes someone we love and we think we have to be “nice” and let that person chip away at us when our health woes are already doing that, because to get rid of them is “mean” and we just don’t dare cross that line. Listen, there’s no definitive proof in medicine that stress and unhappiness cause diseases and illnesses to fester inside of us. But last summer when I was in Boston for three weeks receiving radiation I was under siege, being called every ugly thing in the world by someone who claims to love me, and the emotional pain I was feeling was palpable. This was on top of being off my cancer medication and limping around Boston five days a week to get my treatments, being away from home, being masked several hours a day in heat and humidity, and wondering if the radiation was even going to work to save my life.

I know now that the radiation did its job pretty well, but five months later I had metastasis in my lower body, and guess what? The abuse continued. When I was sitting around a medical facility alone because of COVID19, too far from home, and fearing for my life again after a pretty good run at cancer, the abuse didn’t stop. I still remember that cold December night very well. I had just turned fifty-four. And I certainly wasn’t getting what I wanted for my birthday.

Alas, I have gained control of this situation since then. I was “mean.” I wasn’t “nice.” I had to avoid this hurt and pain at all costs, and I still do. I’m not much on sidestepping problems, but then I never had cancer to deal with. I danced around this blemish in my life and a few others that threatened to bring me to the ground. Sorry folks, it’s about me now. I can’t afford the abuse, any abuse. My goal is zero percent negativity, but this is pretty much impossible to achieve unless you never leave the house!

Truth is, I’m overwhelmed (underwhelmed?) by some of the adversity I’ve had to deal with on top of cancer. You would think people would know better. But some don’t. Does it still apply to say that whatever doesn’t kill you will make you stronger? Perhaps, but when you’re already dealing with something that has the potential to kill you, any extra adversity is totally unnecessary.

Say good-bye to it in the nicest way possible. And if you can’t do it nicely, it’s okay. You’ve earned the right to be “mean.”

Unhappy Trails

It’s hardly a secret that I spend a lot of time in the woods, near and far. International parks, national parks, state parks, town parks, any park. Long trails, short trails, no trails, any trail. The forest is my refuge, where I go for silence, reflection, exercise, clarity. I’m hardly the only person on Earth who practices this. Millions of individuals do. And it seems, as I’ve observed once again, that there are just as many people in the forest that don’t care about silence or reflection or exercise or clarity. Worse, the example that they set for their children says, the forest and the trees and those dummies in hiking boots don’t matter. Don’t worry about them! This land is our land, like the song says. Do whatever you want with it!

To me, no matter how much I travel, a road trip in the United States is the best thing that could happen to me. This summer, I was lucky enough to complete two. I can’t even count how many I’ve taken in this crazy life of mine. But I can count how many times I’ve been disappointed by the behavior of other Americans and their offspring: every single time. The ugly American is alive and kicking and exhibiting several other forms of bad behavior, too.

Here’s my disclaimer: I’m not a parent. I never wanted to be a parent. I will never be a parent. But I am a teacher. I’m that person that takes care of your children for you seven hours a day while you earn a living. I’m the person that gets your child through the least favorite part of their day, and I do it without yelling, swearing, or even being allowed to touch them. Meanwhile, you have them for the part of the day that they look forward to the most, and with all the tools you have on your side your children are disrespectful and you let them be. You bring them to my playgrounds, my refuges, my shrines, and you turn them loose to pollute the silence, the rules, the trees, the rocks, the dirt, and the water and don’t teach them to respect these things. My heart, folks, is broken. Broken like the carved trees and the trashed lands and the sacred air that is pierced with their screams that have no real purpose other than to make noise. But wait, I’m missing something here. The reason that they act like that is because you act like that. You set the example of bad behavior and they follow it. They don’t know any better because of you. Is there a solution? There is. Read on.

The world has places that are made for noise. Disney World. Six Flags. Rock concerts. Sporting events. Go to any of these places and you’ll look like a Scrooge if you aren’t yelling. I know, because I’ve been to plenty of concerts and sporting events, and while everyone is drinking and smoking and acting cool, I’m just enjoying the music and the spectacle and being quiet like I am on the trail. The point is that there’s a time and a place for everything, and the time and place for obnoxious behavior is not on a beautiful hiking trail.

Yeah, yeah, yeah, I GOT IT. We live in a free country. You paid your twenty bucks for a week of touring a national park just like I did. Your kids are going to be brats once in a while. You’re going to be a brat once in a while. You need to let your hair down and decompress SOMEWHERE. So I need to stop complaining and mind my own business.

I won’t. Because the way you act goes against everything nature is meant for. Here’s a perfect example. “Mommy, do you think we’ll see some animals?” little Joey and/or Janey asks Mommy and Daddy. “Maybe!” Mommy and Daddy answer with gusto, as Joey and/or Janey pick up rocks and throw them here, there, and everywhere, stand at the top of a cliff and “practice their echo,” and slip and fall and howl for ten minutes because they aren’t following the rules of wild places. Any animal that would possibly want to come out of hiding to meet Joey or Janey would be of questionable character. Maybe a hungry grizzly? Get your camera ready!

The very reason you’re in the woods is negated by your rotten behavior. Get it?

Please, please, please don’t tell me that children have to scream and yell and crash into me to have a good time. That they don’t have to follow basic etiquette after a long week of being cooped up in school. That just because it doesn’t cost anything to walk a trail, the experience has no value and therefore, no rules. You’re wrong on all accounts. Every so often I hike with kids that know how to act because they have parents that know how to act and pass it on. And let me remind you, I see your kids at the worst of times and show them how to be on their best behavior.

Teach your children well. I do.

My Picture Store

Traditionally, my least favorite time of the year is the end of summer vacation, and the end of summer in general. This year it’s a lot different for me, maybe because I’m on a road trip later than usual and don’t have time to mourn yet. Then, as if any of us can forget, there’s this pesky virus that just won’t go away and threatens all the things that we want to get back to doing. And of course I now have lung cancer and never know when my two year streak of good luck will run out. Yeah, my head is in kind of a weird place, I’ll admit it. Trying to turn the corner to better thoughts and having a tough time doing it. Maybe writing about something that makes me happy will help?

I’ve been posting about how important it is to continue to love life even when you’ve been diagnosed with a serious and chronic illness. In my last two blogs I’ve discussed finding new ways to do what you love and finding new things to love. I failed to write about my love for taking pictures, which sometimes gets forgotten with all the talking I do about the traveling and hiking that go hand and hand with the camera work! As further proof that I’m continuing to move forward with my life in spite of the fact that I live every day with a death threat hanging over my head now, I’ve finally done something that I’ve been wanting to do for years: I’ve set up an online photography store! I’m excited to have some of my beloved snapshots for sale after many years of collecting them.

People have been telling me for decades to sell my photography. I have thousands upon thousands of pictures from my travels through fifty states, forty countries, six Canadian provinces, more than forty U.S. national parks and several national parks in foreign countries, as well as thousands more from around New England, my backyard. Overwhelming stuff!

So, where to start? I chose Picfair as the place to set up my store. Picfair suggests picking out twenty excellent shots. Many of my files are saved on an external hard drive, and that’s where I began, going in alphabetical order. I just about made it through the A’s and B’s! Check out my store with my first “twenty best” pictures.

Whenever someone asks me how I take such nice pictures I have the same line: “Being able to go to really cool places is 75% of the battle!” I’m always looking for an interesting shot. Pictures are so easy to delete now, why not take a whole bunch and only keep the ones you like? Better yet, keep them all in case you change your mind. I’m totally guilty of loading up my cameras and only deleting the blurry ones.

Do you ever see that person that seems to be taking pictures of stuff that you walk right by? Yeah, guilty again! That someone is me. I chase butterflies and bugs and flowers. I’ve been accused of talking to rocks. I’m the slowest hiker on the planet because I have my camera bag and stop every twenty steps for a new shot. With odds like that you’re bound to hit the photo jackpot every now and again.

When I was a little kid my eyes were always drawn to the color green. Green just totally did it for me, and my parents indulged that by buying me green clothes, green bikes, green everything! I still love the color, though my eye has gotten a little more sophisticated. I dig color combinations when I take photos, but I also love black and white and sepia tone. When I picked my twenty best I included all the above and shots from several different places. Soon enough I’ll add to them.

Hey, I’m not asking you to buy anything, but I’d love to know if I made some good choices. I tried to do a post on Facebook a couple of weeks ago, but of course you can’t expect to reach anyone on FB without contributing to the Let’s Make Zuck a Zillionaire Fund. Have a look and drop me a line if you can!

I’ve peppered this post with more of my favorite shots from around the country and around the globe. They will probably make it onto Picfair sooner or later!

Okay, I feel a little better now. Life goes on!

Finding New Joy

Hey, how is your summer going? Mine: Great! In fact, I’m ready to head back out on the road again before I have to return to teaching at the end of the month. Before I do, I wanted to get back to talking about how to live happily and successfully with a chronic illness. Yes, I have one, lung cancer, and yes, I’m still loving life.

In earlier posts I laid out some ground rules to consider that work for me. Below, I’m going to list them again, with links to the previous posts in which I expand on the point:

1) Get the best medical care possible

2) Seek no sympathy

3) Find new ways to do what you love

4) Find new things to love

5) Surround yourself with positivity

6) Don’t let your illness define you

In this post I’ll expand on number four, find new things to love.

I don’t know about you, but the pandemic taught me that I can do things I didn’t ever think I could. Maybe it was because I had more time on my hands than usual. I’m a person that is constantly busy doing the things I have to do, followed by the things I love to do. The other way around if I’m having a really good day! One of my favorite ways to pass my time, namely traveling, was a little tricky when we were all quarantining. So, I took on a new hobby, since I was around town so much more. My new fun was art! And I found out that I’m better at it than I used to think. No, I’m probably not ever going to sell anything that I’ve created, but I’ve decorated my walls and steps and porch with my creations, and I’ve even added a new twist to some of my plants! It’s not important to me whether anyone likes it or not. I’m being fulfilled and I’ve expanded beyond my writing/hiking/traveling mindset! Check out a few of my “projects”:

If you aren’t interested in art, find something else. Maybe you’ve always wanted to learn a language. Maybe you’d like to learn the rules of football so you know what all the hype is about. How about playing an instrument? Learning to cook or bake better? Planting a garden? The trick is not necessarily to “master” something, though you may very well end up doing that. What’s really important is to continue to learn and grow. When we suddenly have an illness that is not likely to get better or go away we tend to think that we might as well just give up, since our lives will probably be over soon. When I was first diagnosed with lung cancer things weren’t looking all that good for me. But to my surprise, I was able to move forward, and due to a few smart moves (see my list above!) I’m still doing just that. If I can get back on track you can too. Truth is, we are lucky to live in a time that is full of medical breakthroughs that help us to live better and longer. Is there something you’ve always wanted to try? Do it! Challenge yourself, and keep challenging yourself!

Last year I shattered my on foot mileage record. 1,850 miles! I averaged five miles a day. That’s a lot of walking! I decided that this year I wouldn’t try to break that record, but would make a new goal for myself: 1,500 miles on foot, 500 miles of biking. I’ve had a bicycle hanging around for a decade, hardly riding it over the past few years, not for lack of wanting, just too busy doing other things. This summer I’ve really been putting myself to it, finally! I’m not likely to reach my goal this year, but that doesn’t mean I’m giving up! I’m just happy to really be doing it instead of talking about it. For me, it’s the excitement of seeing things in a new and different way, finally doing something I’ve been talking about doing for a long time, and having yet another hobby that makes me smile!

Perhaps the greatest thing about learning something new is that your mind is busy and you aren’t dwelling on things that make you sad or angry. That doesn’t mean you’re in denial, but it does mean that you’re putting your best foot forward and coping with the unwanted changes in your life. Try it. I think you’ll like it!

Happy Birthday, Ma!

I was supposed to be in New York City today, honoring the life of my precious mommy, but I got rained out, so guess what? I’m dedicating a blog to her!

On this date, July 29th, in 1924, an amazing baby name Genevieve Josephine was born in Palmer, Massachusetts, or that’s the way the story goes. Back then the records weren’t always so accurate. Ma always said that she may have been born on the 27th or 28th. But the accepted date was July 29th, and that’s when we always celebrated the date of her miraculous birth. Ma was someone worthy of many celebrations!

Children never want to think that their parents had lives before they were born. Admittedly, I didn’t know enough about her younger years until after she passed away.

Genevieve’s parents came to the United States via Ellis Island from Poland and were largely uneducated. However, Genevieve was a hard working student at Palmer High School. She always spoke with pride about graduating in 1942. The first picture (above) is her graduation picture. Genevieve, being a daddy’s girl, would hold tight to the dream of someday going to Czestochowa, Poland to visit a monastery called Jasna Gora, home of the world famous Black Madonna, to honor her father by lighting a candle for him there. Maybe Genevieve, being a small town girl, couldn’t dream big enough to think that this would ever come true. But it did. One of her future daughters would make sure of it.

Genevieve worked what some would now call “menial jobs.” But she wouldn’t remember them that way. World War II was raging in Europe and Asia and Genevieve would be a part of the effort to support the troops. When the war was over she would marry a striking but troubled young soldier named Albert and together they would eventually have six babies. All of those children were girls, the first one born in 1951, the year after they were married, and the last in 1966, when Genevieve was 42 years old, quite a feat at that time in history.

Genevieve gave everything and more for her six children, but she never had the comfort of being a housewife, for Genevieve and Albert were not rich by any means. They both had to work full time jobs in order to have a safe place to live, a decent car to drive, and nice things for the children. Genevieve and Albert didn’t seem to care much about that, because they had each other and their six girls.

Then one cold winter’s day in 1977, Genevieve no longer had Albert, because he died suddenly. She had to go on alone and somehow fight through life without her only love. Genevieve kept going to work and keeping her family afloat even though her spirit was ripped away from her without warning. It would take her a decade and a half to get it back. Meanwhile, her beloved children began to scatter and break apart.

Many years after losing Albert, and as her six children struggled to find their own footing, Genevieve found a new and unexpected love: traveling with her youngest daughter, though that love would be fraught with constant worry, as her family fell apart. As strong and as perfect as her love was, it just never seemed to be enough to mend the destructive forces at work around her. As much as she loved traveling, the loss of the love of a few of her daughters, and the death of her beloved husband couldn’t ever be replaced. She would never be able to fully enjoy life again, though there were happy times. She held her head up and moved forward.

In the end, Genevieve went further than she ever thought she would: to that monastery in Czestochowa, Poland to honor her father, to the running of the bulls in Pamplona, Spain, and on some pretty great road trips to most of the 50 states, including Alaska and Hawaii. In 2004, Genevieve took her final road trip and never looked back.

Or, maybe she did. But as her youngest daughter and travel companion, I believe there came a time when she said, I’ll see you when you get here, and chose to truly rest in peace.

Seventeen years is a heck of a long time to be without her, but in some ways it’s a relief that she is in that “better place” and away from a few individuals who still insist on tarnishing a legacy of love, from a heart so pure that everyone should be so lucky to know such beauty. Sometimes I wonder why I’ve fought cancer so hard when I’ve had some pretty great opportunities to be with her again, forever. My love of life won out, but next time, who can tell.

For now…

I love you, dear Genevieve Josephine, and I will spend the rest of my life defending your honor, no questions asked, because I know you deserve better. You deserve the best. I will make up for anyone foolish enough to think differently.

Happy Birthday.

California Reunion

Hey, if you don’t mind I’m going to take a break from talking about living with a chronic illness for a post or two. I have to tell you about my reunion with California!

This joyous reconnection with the Golden State was extra special because it came so frighteningly close to not happening. In fact, as I said in my last post, which I wrote while I was on the road, the trip got cancelled twice, the first time because of cancer, the second time because of COVID19. For weeks I was sure that once again something would stop me from going, that it wasn’t meant to be. It was so nice to be wrong! And the trip could not have been more perfect.

If you said that I’m kind of “prone” to hiking trips, you would not be mistaken. However, this wasn’t a hiking trip. Which is not to say that I didn’t do any trekking. Of course I did! But the entire plan was based around seeking out graffiti in Southern California and born from seeing the works of a professional photographer on Instagram who travels the U.S. taking pictures of really cool stuff. I did my research and strung several sights together, then figured that while I was there I may as well just take another week to see some old favorites, and there was my California reunion!

I lived in Los Angeles for five years from 1995 through 2000, and traveled extensively in and around the state. I guess I didn’t really realize until now how blessed I was and am to have been able to do that. It’s the only place I’ve ever lived other than Massachusetts, where I was born and currently reside, and I have to say that for me, a lover of the American West, there could not have been a better place to be. Mother Nature took one of everything amazing and tossed it into California. Sometimes, more that one of everything amazing. Though I’ve been a million other places around the world, I’ve never quite fallen in love with anywhere like I have the American West. I used to crucify myself for never having lived in a foreign country. How silly that all seems now.

Unlike most people, who think the desert is “too hot” and “boring”, I absolutely love it there. Deserts have ghost towns, tumbleweeds, and cactus. What’s not to love about that? I spent several days driving around the Salton Sea, an imposing but fascinating (and smelly) remnant of a failed experiment to lure vacationers and home buyers seeking the good life. If you’re like me and looking for graffiti, sand, and desolation, wow do you ever have to see the Sea! In addition to all that there’s Bombay Beach, an almost ghost that was revived as a quirky artist’s town, and Slab City, an “off the grid” settlement where people live for free. There’s lots of additional interesting art in Slab City as well as East Jesus, the eastern corner of the “squatters paradise.” I even did some research into one of the towns near the Salton Sea because I was inspired to use it for a locale in the book I’m writing. Such excitement from a place most people pass by without giving it a second thought! Is it any wonder why I choose to travel alone so often?

Didn’t I tell you that California has one of everything? Or, let’s make that more accurate: California has EVERYTHING!! Let me expand on that.

The post-graffiti part of my trip brought me to the Sierras, where the best ghost town in America nestles. No, Bodie isn’t in the desert, but it is at the end of a wild dirt road about twelve miles east of Bridgeport, California, and it is a state park, so there is a small fee (I paid $8) that goes to Bodie’s upkeep, which is impeccable. On the way I drove a few hundred miles of US 395, which I have to proclaim one of the country’s great highways. I stopped off in Lone Pine, which is still very much like the desert, and did a short and stunning hike to Mobius Arch in the Alabama Hills, where I also got a pretty special view of Mount Whitney, the highest point in the “lower 48” at 14, 505 feet. Did I mention that you can see Whitney through the arch, too? No, the thrills just never end.

Mono Lake and the Mono Basin are right outside Yosemite National Park. To me, Mono is so good it’s okay to skip Yosemite to see it. Don’t miss the short hike through the odd fantasy of the South Tufa Trail. You can bet that I didn’t!

Girl, take a breath…

The June Lake Loop is a sixteen mile drive around four lovely lakes at an elevation of 7,600 feet. Of course I had to get some hiking in here, and I encountered some bristlecone pines, that are said to be the oldest living things on Earth, even older than sequoias and redwoods. Even older than me! The loop was my last stop in the mountains before I headed back to the desert. I had to have one final jaunt in the hot sand before I came back to reality.

Death Valley Junction is the gateway to the park of the same name and a charming little desert hamlet with a hotel and opera house, much of which are beautifully hand painted by its former owner. Read her incredible backstory here. I’ve loved this town since I first saw it on a map as a dreamy-eyed teen, and it was so special to see it again before I moved on to Death Valley. Yes, I intended to hit the trails, but at 100 degrees at seven in the morning, I had to rethink my plans. Hiking had to be done in short bursts with plenty of time in the air conditioned SUV in between! Death Valley has been getting a lot of attention lately for record breaking temperatures, but the mercury varies greatly depending on what part of the park you’re in. I headed to Dante’s View to marvel at the salty Badwater Basin far below. It was twenty degrees cooler and with a hair-mussing wind. Lastly, no temperature was hot enough to make me miss wandering through the pastel hills of the Artist Palette. I felt like I’d fallen into a giant vat of ice cream!

Two weeks, a two thousand mile loop, and I just barely scratched the surface of the greatness of California. Oh well, looks like I’m just going to have to go back!