The Real Meaning of MY Christmas

Happy New Year! Yeah, I know I’ve been absent for a few weeks and am a day late and a dollar short as usual, but like mostly everyone else, my holidays were darn busy. For Christmas 2021, I was supposed to resume traveling internationally by enjoying a trip to Costa Rica. Yet as the day got closer, I knew it wasn’t the right choice. I’ve been experiencing some pretty intense back pain for several weeks now, so that was the first issue that made me question if I was doing the best thing for me. Add the possibility of getting hung up in a foreign country due to COVID19, and the cost of being tested to have the privilege of boarding the plane home, and all arrows were pointing toward exercising my cancellation insurance and waiting until circumstances are better all around.

The decision was still a tough one. I wanted to resume my life of seeing the world, and this was a huge step in the right direction. My last trip out of the U.S. was summer of 2019 in Sri Lanka, before my cancer diagnosis, and I’ve been struggling to be me again since then. Cancelling anything, especially trips, is just not like me. Still, the gnawing inside me said that it wasn’t what I should be doing.

So I cancelled.

Then, a golden opportunity arose.

Even before that, something pretty incredible and highly unlikely took place: no cancer showed up on my last scans taken December 20th! Does this mean that I’m cured? That cancer will never be a part of my life again? That cancer is no longer a part of my life now? That treatment changes or ends? No, it doesn’t mean any of that. It “only” means just what I wrote: cancer cannot be seen. Meaning: it’s probably still there, and will likely come back, but the medication I’m on is controlling it very well for now. How long it will last, no one knows. I can only hope it will be for a long time. This doesn’t diminish the miracle that brought me to this, from where I was a year ago. If you know anything about metastatic cancer, I’m damn blessed. If you knew anything about my cancer specifically, well, I’m a long way from where I was in December of 2020. Read about my roller coaster journey here and here.

The table was indeed set for that golden opportunity.

As soon as I told my niece that I was thinking of cancelling my trip to Costa Rica, she invited me to South Carolina to spend Christmas with her. Yes, this was exactly what I needed: a familiar place where I could rest if necessary, a faithful black dog for quiet company, and maybe even some warmer weather. Not perfect Costa Rica weather, but South Carolina would do! And Costa Rica doesn’t have my niece and her dogs!

I just had to come up with reasonable airfare. From years of traveling at Christmastime, I recalled that December 24th to the 31st are usually the cheap dates. This remains true! I got a great fare and would soon be on my way! But not before wrapping and distributing many presents, falling on black ice, receiving as many presents, seeing friends and family before I left, battling crowds in the stores, starting PT for my back, working full time…

My last two posts are a short story I wrote several years ago. Titled “The Real Meaning of Christmas,” it’s a tale about a woman who disdains the holiday, yet finds her own peace in the season. Hmm, sounds like art imitating life! Because of course, that’s just what I did.

Long before cancer, Christmas was a tricky time of the year for me, and remains so. For more than twenty years escaping has been my way to combat ambivalent feelings about Christmas and what it has come to represent in our culture. Most of the time I would run off somewhere and spend the holiday alone, sans blinking lights and jolly men in red suits. South Carolina is my new favorite escape, and I’ve even learned to appreciate my niece’s special brand of hospitality.

We have a routine whenever I go and visit: bowling, a local farm, ice cream, Chinese food. I’ve gotten to know some of the local people and am always made to feel welcome. That naughty blond pup above vies for my attention with her darker brother while her mom spoils her rotten. Usually when I show up the weather gets thirty degrees colder. Not this time! It was in the 70’s all week. My back started to feel a little better, I got lots of sleep and lots of love, collected and gave more presents, and had turkey dinner left over from Thanksgiving, when I couldn’t be there. I found the real meaning of MY Christmas, and made the correct choice for me.

Perhaps I’ll never really love Christmas again, but I’ve made progress.

I had a great holiday, but I’m glad it’s over for another year! Bring on 2022!

Stop Calling me “Sick”

I’ve been called a lot of things in my life, and many of them are unprintable. I’ve been called a lot of things since I was diagnosed two years ago with Stage IV lung cancer, and while most of them are probably printable, a few of them are out of this world unbelievable that someone would have the gall to refer to me in such a fashion. One term that I’m really done with is “sick.” According to several people, I’m “sick.” Sometimes the word is inserted into a favorable sentence, so I guess that makes it okay. An example: “No one would ever know that you’re sick.” Am I supposed to be flattered? Would you be flattered if I said this to you? The truth is this: Your “sick” description only moves me further away from who I’m fighting to be again: ME.

How many times do I have to say this? How many people do I need to tell? If I’m not interested in being a “warrior” or a “hero,” why in heaven’s name would I want to be “sick?” The irony is that if I didn’t tell someone that I live with cancer, they wouldn’t even know it. I have stopped telling most people my story, have stopped sharing it on Facebook, have refrained from updates and day by day reports. But some of those in the know have my dossier open in front of them, and instead of being the “Barb Lee, writer, blogger, and traveler,” of the past, I am now “Barb Lee, full-time cancer warrior and permanent sicko.” Never mind that I continue to do all the things that make me who I used to be. Now, my illness defines me.

For the record, are there times when cancer consumes me? Of course. In fact, now is one of those times. As I type this I feel like crap. My back hurts, my gut hurts, my head hurts, I want summer back, and I want this pain to go away. I want my medication to keep working, though I fear it has stopped being effective. I don’t want to be “sick” in the eyes of those who think I am. I want to have another round of great scans next week and keep going in the right direction. Right now, none of those things are happening or seem like they will work out, and I’m floundering.

But here’s what history tells me: I always manage to turn the corner. Though it’s always in the back of my mind that someday I won’t turn the corner, I have not reached that particular curve in the road yet. Nor am I planning to any time soon. Does that sound sick?

And how about this fact: I really do love being a survivor. There is something pretty special about being a survivor. A lot of folks out there claim to be survivors, but only some of us can really offer hard and fast proof of cheating death. So should I accept being labeled as “sick” because in order to be a “survivor” I had to come from a place of being severely ill?

Then there’s that pesky little fact that Stage IV cancer isn’t curable. But what the general public doesn’t know is that the cases of people living well beyond their expected expiration date are on the rise in a major way. Big Pharma isn’t withholding a cure for cancer to make money. Big Pharma is plugging away behind the scenes to keep making better and better drugs so that cancer patients like me can continue to live our lives like we always have. There ain’t nothing sick about that!

Here’s a fact too: a pretty high percentage of those that refer to me as “sick” don’t do nearly as much in a day as I do. Maybe they’re the sick ones?

I didn’t feel good for a decade before my diagnosis. Almost always, something didn’t feel right. For a while, I ran doctor to doctor trying to figure out why a woman who was in great shape, looked as healthy as a horse, and did everything she could to stay that way, felt like crap. No one had answers. Some of the individuals I pleaded with for help didn’t believe me. One of my favorite comments was, “Are you depressed? Do you need an anti-depressant?” I gave up after a while and just dealt with whatever I was feeling inside. Until I got the big answer in October of 2019. Quite an eye opener.

Sigh.

The moral of the story is this: I don’t feel that much worse than I did when everyone thought that there was nothing wrong with me, when what was really wrong was unknown. No one thought I was “sick” then. The only difference is that the secret is out, and it’s a big ugly one. I’m still the same ME, and I don’t accept the “sick” label any more than I accept the “warrior” label.

Please…STOP.

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.”

Chronic Adventuress with a Chronic Illness

Yeah, I guess it’s time for me to face the facts: I’m going to be a sickie for the rest of my life. Believe me, even if I try to forget about it, there’s always someone there to remind me that I could be just as easily knocking on death’s door as I could be hiking mountains and enjoying life. Whoa, wait, did I just say enjoying life? With a chronic illness? Yes, truth of truths is that no matter what stage IV cancer has taken away from me, there’s still more that it hasn’t taken away from me. The number one thing I still have is my happiness. We’re talking real, deep happiness, not the material kind that a lot of people try to substitute for the genuine product. In fact, I find that more than ever, little things make me smile. A lot of things make me smile. And they make me smile a lot! Understand?

Since I was diagnosed in 2019, I’ve tossed around ways to help others who are struggling with illness. I touched on being “the new face of surviving cancer,” and wrote the story of my first year with the disease. (It’s in a drawer now, unpublished!) I’ve ridden the “Who am I now?” wave the whole time. After a recurrence soured my survival skills for a few months, I’m back in a comfortable place full of hope and future plans and feeling like I have something to offer others living with chronic illnesses.

Before I start sharing my thoughts, let me first clarify a few things. Most importantly, my chronic illness is lung cancer, which, if I had it ten years ago, would have undoubtedly killed me. I am extremely fortunate that my illness can be controlled with medication. This likely sounds far fetched, but it really isn’t. Read here for more information about how we can now treat some individuals with lung cancer. Also, my disease has nothing to do with smoking, so before you think that I somehow “asked for” this, read here about how many people who get lung cancer now have never smoked. With that out there, let me just say one more thing…

I recently Google’d some general keywords to be sure that I wasn’t stepping on anyone’s toes by calling myself the Chronic Adventuress with a Chronic Illness, and was disgruntled to find out that there are a heck of a lot of “experts” out there writing about living with a chronic illness who don’t have a chronic illness. That decided it. I have the first hand experience to back it up. And, I can honestly say that I’ve had to change my lifestyle very little since my diagnosis, thanks to steps that I have taken to preserve my well being. I’ve intentionally peppered this post with photos of me winning at the game of life. All of them were taken post diagnosis.

Without further ado, here are my six suggestions:

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

I planned to talk about all six points in this post, but I know the limits of the human attention span circa 2021. Having the opinion that these are all crucial (and we are, after all, talking about life, and living it as happily as possible,) I think they all deserve to be fleshed out, and I will give them all their due, even if I have to write several different posts! So for now, let me talk a little more about #1, GET THE BEST MEDICAL CARE POSSIBLE.

The best medical care possible? A no brainer, right? If I thought it was a no brainer I wouldn’t even mention it. Getting the best care possible is not a matter of insurance or money or location. It is a matter of choice, plain and simple. While I’m extremely fortunate to live within driving distance of some of the best medical facilities on the planet, don’t think for one minute that patients don’t travel great distances across states, countries, and oceans to get here. And don’t think for the next minute that there aren’t people who have access to the same care that don’t seek it, because there are. I urge everyone I talk to who has a serious illness to research the best, and get it any way they can. The more serious your illness, the more likely you are to need something beyond your local hospital. Don’t waste precious time getting what you need and deserve!

I’ve now exhausted your attention span!

I promise to get back to this discussion soon. Until then, adventure on!

Finding A Middle Ground

Hey, did you notice that I changed my site identity from “The New Face of Surviving Cancer” to “Write. Hike. Survive. Thrive?” Yeah, I guess I’ve decided that I don’t want to be the former and would rather concentrate on the latter. Make no mistake, I am not ashamed of who I am now, with cancer survival on top of everything else I’ve managed to accomplish in my life, but the last couple of months have been pretty tough on me and I find myself desperately needing to find a middle ground. I cannot be all cancer all the time.

When you join a clinical trial, (another thing I never wanted to do but have to do if I want to live) you’re kind of at the mercy of the drug company, or “sponsor,” as they so poetically refer to themselves as, and that has been the story of my life for the past five weeks. Don’t get me wrong, I’m thankful that it appears that I’m making progress. And what the heck else is there to do while we’re all trying to figure out whether COVID19 is coming or going! But I’d still rather be left alone to live my life. Only, that’s the whole point. If I’m left alone to live my life I’ll die. Understand now?

I started out a year and a half ago with this big plan to ditch the fiction writing career I had craved since I was a teenager to focus on nonfiction books and blogging. Hiking and traveling would be my favored subjects. Then cancer came a calling, and I decided that I’d roll with it. I’d start speaking at libraries and other local public places about being a cancer survivor and turn it into a full time gig. COVID19 blew that to smithereens. But I continued to work on a book about my journey, which I finished at the end of 2020. After taking a break from the writing to let it settle for a couple of months, I opened it back up this weekend, read six pages and said, I cannot continue to relive this nightmare.

So guess what I did? I opened one of my “writing drawers” and allowed it to swallow up my “cancer book.” Meanwhile, a fictitious tale of a pretty girl and a football player jumped out. It was one of three other full manuscripts I have hanging around, waiting for the attention I never thought I would give them. But guess what? Fiction is sounding like a hell of a lot of fun again. A hell of a lot more fun than I’ve been having lately. Truthfully, I don’t think it’s a really hot time to be writing books about the hiking and traveling that most of us have not been able to do much of in over a year. And I so want to continue writing books. What can I say? I love writing books. Fiction may be the key again. But I also love blogging. Who ever said I can’t do both? Me. It seems that now and forever, I’ve always been my own worst enemy.

Especially over the past several weeks. My mood has been dreary, at best. My beefs, not necessarily in this order: I have this flippin’ disease. It’s snowing and cold and windy in New England. I’m going up and back to Boston in the worst of it and getting stuck with needles and tested to high heaven to keep me from going to high heaven. Even if I could travel I can’t travel because of a global pandemic. Then my fingers start doing the walking to search out the very worst information I can possibly wrap my mind around about Stage IV lung cancer and yeah, then I’m in the hole big time.

Jeez, enough is enough.

Here’s what I realized the other day. Who is telling me I’m not going to be alive to see the end of the pandemic? Me. Who is telling me that I’m not worth anything now that I have cancer? Me. Who is telling me that I’m never going to travel again? Me. Yeah, I’m the culprit. To repeat: my own worst enemy.

Back to finding the middle ground and the search for some firm footing.

I’ve never been one to live one day at a time. No, more like a whole lifetime in a day with my eye on an even better future. Maybe I get one day at a time now. Still, I need to have plans. I’ve decided it’s safe to look into the near future. And I’m not spending all my retirement money to “live like I’m dying” because I know how that goes. Anyway, I’ve spent the last decade living like I was dying. Yeah, really. Things were pretty good there for some time. Can they be again, in spite of everything? I have to believe they can. But I can’t be too sure of it, because I don’t want to be devastated again. I am moving forward with caution, and with the knowledge that I will still screw up and wind up in the hole again.

But hey…It’s spring. My treatment appears to be going in the right direction. Southern Utah is on the April horizon. I’m thinking about summer road trips. And oh yeah, that book…

I can do this!!!

About Those Cancer Posts

My next post was supposed to be about a couple of cool hikes that I’ve recently done, but I saw something on Facebook that put me over the edge and I need to have my say about it.

Listen, I know that you’d rather me blog about hiking than cancer. And yeah, I’d rather be blogging about hiking than cancer. I’d rather be doing just about anything than talking about and worrying about and reading about cancer, but here I am, about to write yet another post about, you guessed it, CANCER.

Why? Well, let me explain.

Cancer sucks, if you don’t already know that. I hope you don’t. I hope it has never touched your life. If it hasn’t, you’re in the minority. So many people I know have lost mothers, fathers, sisters, brothers, husbands, wives, and children to this beast that nearly took me a year ago. This monster took my sister five years ago. It’s horrible. I have first and second hand experience at cancer.

And guess what? I’m sick of it. I’m especially sick of people who don’t have cancer going on cancer sites and making comments about how “Big Pharma” is withholding a cure, and how CBD oil made their father’s cancer go away forever. Both are major myths, both are words that no one with cancer wants to hear. So stop saying them. I also love the ones about green vegetables and green tea being the answer to everything. Sure, good luck with that. (When your cancer disappears because of iceberg lettuce, let me know, okay?) But none of these examples are what really got under my skin a few days ago. Here’s what did me in: one of those “copy and paste, don’t share” posts that run rampant on Facebook. Now is when I would normally say, “Don’t get me started on that,” but it’s too late, the damage is already done.

First of all, who writes these things? I want that job, and I want to get paid well for it. Because I can write from experience and compose something better, more truthful, and more accurate than whomever is putting this shit out, particularly about the subject at hand. Furthermore, some of my friends that post these things write better than that, but they repost this crap anyway. Not only have I learned things about cancer that I never wanted to know from these stupid posts, but I’ve also been hit in the face about how I need to curb my jealousy when a twenty year old woman with a beautiful body walks by, because I once looked like that, so I need to get over my desire to wring her pretty neck. Only I don’t want to wring the neck of the pretty twenty year old woman because, cancer and all, I don’t want to be anyone but me. I honestly don’t want to be her. Facebook is mistaken, and so is the loser who wrote the viral nonsense.

But, I digress. The “copy and paste, don’t share” post that has me frantically punching the keys of my computer was all about cancer treatment and was meant to honor me as a “warrior,” in my “battle” against chemo and radiation. The offending words remind me that after chemo, I will never be the same again, may never even feel “alive” again. My immune system will be ruined, and so will most of my relationships, because of the damage done by treatment used to “fight the nastation.” (Ooooh, that little red line under “nastation” is telling me that some smarty pants is making up fancy words for Facebook! Don’t get me started on that!) In short, my life is going to suck royally because of cancer, “a very aggressive and destructive enemy of our bodies.” OUR bodies? Is the writer as well as the Facebook user that’s so busy copying and pasting trying to imply that they also have cancer? Because if that’s so, said person better get researching, because he/she/they/ whoever they are, are way off.

First of all, thanks for reminding me that I’m never going to be the same. As if I need anyone telling me that as I struggle to get “me” back after my life was turned upside down. Secondly, before you EVER post such hoo-ha, realize this: the combination of traditional chemo and radiation will eventually become a thing of the past, and in many cases, they already HAVE. Thousands of cancer patients have infusions of immunotherapy or take pills to kill the disease. I didn’t need chemo. And radiation for me was a CHOICE I made because it has made a cure more likely for me. I walked five miles a day daily while I had radiation, not because I was trying to show off or prove something, but because I COULD. I rocked radiation, and I’m sure I’m not the only one.

I know these posts mean well, as do the individuals hitting the handy little “copy” button. But they’re also extremely negative and uninformed. There is enough misinformation out there about cancer. The real truth is that cancer is an individual journey, not a one size fits all. Some people aren’t going to do well, others are going to beat it. I’ve known many of the former. I’m one of the latter. And in response to everyone out there frantically spreading the nonsense and giving advice about green vegetables and CBD oil and lifting the middle finger to “Big Pharma,” I’m intentionally littering this post with photos of me loving life even as I give cancer the boot. Every single picture here was taken after my diagnosis.

Copy and paste THAT.