Not Another Cancer Survivor’s Story?!

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Yeah, I’m a cancer survivor, and yeah, I’m writing a book about my journey. Told here for the first time, the tome’s working title is “Destination Life: My Cancer Road Trip.” Though everyone has a story to tell whether they have cancer or not, I think that my tale is quite interesting, perhaps even a little over the top, and not one you’re going to hear that often. Some parts of it are typical for sure. Yes, my life was devastated. (Though really, is having your life devastated “typical?”) Yes, I was frightened that I was going to die. And yes, I had an incredible amount of stuff to learn. This is probably where the “typical” part of my journey ends. Because I’m one of those people that eventually took control of my care, had a fair amount of good luck in a bad luck situation, called out the prayer warriors, eliminated negativity, and saw things turn around quite dramatically. I know the wonders of modern medicine. I know the power of Big Pharma. But I had to go through some poop to get to the right place.

Before all that happened, I was just a human being flailing with the thought that my life would never be the same again, and maybe I wouldn’t even have a life to look forward to:

It’s still warm in New England, and foliage season is approaching. Autumn is not my favorite time of the year as it is for many, but definitely a beautiful time, and one that I always enjoy hiking in. The leaves are changing colors, and so is the rest of my world. As my sister drives us home the “C” word starts to set in. I look at other people out the window and they appear so casual, so carefree, no worries in the world. They don’t have to think about cancer, but I do. And I come to understand something again, that I realized in 2004 after my mom passed: the world still goes on. Life goes on, even as you’re suffering, even as your life or your world has suddenly been dealt a devastating blow. The world doesn’t care. It has to keep turning for everyone else. It is one of the many sad facts of humanity.

As I write this post, I’m stronger than ever in many ways, but I had to find my wings to fly through my new life. It wasn’t always easy or positive. The ground I was walking on was shaky, uncertain. The fear was real, and debilitating. For a while, the news was getting worse. Here’s an excerpt from one of my darkest days:

A lymph node on the right side of the base of my neck is on the rise. Supposedly it’s on the PET scan, but wait…wrong. The one on the PET is in the lung, a hilar node. The neck node is unaccounted for. I discover it when I scratch my shoulder one night, while talking to my sister on the couch. So now there’s four areas.

          Or…five?

          Dr. L finds an abnormality in the back of my throat and matches it up on the scan. Now we have to find out what these two new discoveries are. The possibility of two different cancers is floating around. Could I really be that unlucky? Head and neck cancer, and lung cancer, too? The cure word gets tossed aside, the waters  muddied. The rug gets pulled out from under me again.

          More questions without answers are swirling around. This is an all-time low point. Two more biopsies are on the near horizon. The throat node requires a trip to another specialist, an ear, nose, and throat (ENT) doctor.

          Treatment looms too far ahead as cancer grows inside me, packing its bags for an adventurous road trip.

I wasn’t totally serious about this book when I sat down to type it from the original journal I composed in longhand. But I’m committed to it now, as hard as it is to relive such heartrending moments so soon after they happened. Yes, this was only four months ago. Oh, how far I’ve come since then!

I don’t know how this particular book will end, since my new life is still unfolding in the most interesting of ways. Nor do I  know when it will be done. I’m not on a schedule; I’m in no hurry. But I’m pretty sure that it won’t be the only book of its kind. Thinking it might be a series. I have a lot to say, and I’ve always wanted to write nonfiction. Here’s my chance!

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What You Must Do After a Cancer Diagnosis

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

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

Gather the Troops

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

Do Your Research

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

Don’t Place Too Much On Statistics

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

Advocate, Advocate, Advocate

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

Know Every Option

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

Get a Second Opinion

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

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

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

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Am I Cancer, or Am I Still Me?

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

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

I keep hearing the usual things.

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

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

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

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

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

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

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

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

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

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

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The Big Adventures of Little Lump

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

I HAVE CANCER

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

I HAVE LUNG CANCER

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

The saga begins with Little Lump.

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

 

Cancer Bitch