Here I Come Again

I don’t know about you, but 2022 hasn’t exactly been a memorable year for me thus far. I’ve just dealt with six months of intense back pain dating back to September 2021, in addition to stage IV lung cancer dating back to October 2019. Yay, me.

But guess what? I finally got what I needed. Did my six weeks of physical therapy, (well, eight!) then my insurance company ponied up for my steroid injection. As I type, it has been a handful of days, and I definitely feel a difference. I’m hoping that as the next week or two passes, I’ll feel even better. Just as important as the way my body feels, is the way my mind feels: I finally have a stepping stone for turning my life around. Again. How many times will I do this? How many times will I be allowed to do this before my clock stops ticking? Somehow, someway, I don’t think I’m done. I think I can move forward. As some people like to say, “You got this.”

What a sigh of relief.

Funny/not funny what pain does to you. I can almost handle the cancer, because the odd truth is that my life continued much as it did before my diagnosis once I was on the right treatment plan. But this back stuff? It has tormented me beyond anything physical I’ve ever dealt with, has delivered a crushing blow. Add sucky New England weather to the mix and it’s a true recipe for disaster. I have not been to my favorite local hiking haunt in two months! This is horrific news! From September until November I continued my exploration of the trails around Quabbin Reservoir even though my back ached, and it kept me sane. Since the snow and ice shut me out of much of my outdoor activity I’ve been yearning to get back outside with the animals and the trees, to get my feet moving, take some pictures, feel like I’m alive again. Here I wait (impatiently) for a stretch of weather that’s warm enough to melt some of the ice and give me a Saturday afternoon to get back out there and forget about stuff for a while.

Don’t get me wrong, I’ve kept myself busy with my “indoor” loves: writing my latest book, posting to this here blog, doing my special brand of artwork, reading, working on photo albums, continuing my studies of the Polish language. I’m not giving any of that up! I just have to get back to walking off those steps and miles that mean so much to me and keep me grounded. You really don’t know how very much something means to you until you can’t do it.

Know what else I need to do? Plan travel. I’m heading to South Carolina again in a couple of weeks to see my beloved niece. I need more on the calendar after that. I’ve always kept myself going by making plans. I’m seeing Southern Utah, Cape Cod, California, Oregon, and Portugal in the not so distant future. Maybe later in the year I’ll reschedule my canceled trip to Costa Rica, but COVID19 has to look a lot better before I even think about leaving the country. As long as I go somewhere, I’ll be okay. The idea of getting back to globe trotting and country hopping is always a possibility, but is not the necessity that it used to be. I’ve done a lot of crazy stuff, and I’ll do plenty more, but safety is first and doing what appeals to me most runs a close second.

Right now, my number one goal is to drive twenty miles to the north and walk a flat trail down to the edge of the largest inland body of water in Massachusetts, like I’ve done hundreds of times before. Having the sun shining would be a big plus. Melting snow, even better. And silence. Lord, give me silence! Five miles of silence. I have not done a five miler in several weeks. Several weeks too long.

Even though my feet aren’t quite moving yet again, just being able to wrap my mind around the possibility of resuming my active life is a miracle. Maybe 2022 will have some happy memories after all?

Hey, guess what? I got my airfare to Albuquerque, my chosen gateway to Southern Utah, last night. Booked my hotel on Cape Cod earlier in the week. The forecast for this Saturday is for sun and 50 degrees. I’m adding hiking to that forecast. It can’t come soon enough.

Yeah, I got this.

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