The Road I’d Have Rather Not Taken

August 18, 2023 marked the one-year anniversary of my breast cancer diagnosis. After a final mammogram that day, I was informed that I had no new cancer developments. That was certainly celebration-worthy news, but I let the day go by without much fanfare.

My cancer journey’s bumpy road has included several unexpected road blocks and detours along the way. Until now, I’ve shared those challenges with only my closest family and friends, as well as my boss and co-workers. So, if you follow my blog, you'll understand now why I haven't posted anything since last year. I appreciate your understanding and would like to share my story now with my readers.

While my travels began as a desire to create a baseline for future health visits, my itinerary quickly morphed into a path of endless tests and treatments. Instead of being deemed physically fit, my intended healthy destination ended with three of the diseases ranked most profitable in the healthcare industry: cancer, diabetes, and heart disease.

Fortunately, my tumor was found early enough and had not spread anywhere else. At first, my doctors believed there were two small tumors next to each other, but it was later determined to be one larger tumor, which bumped the diagnosis up from stage 2 to stage 3, despite not having spread to the lymph nodes. Still, hearing the words “malignant tumor” and “stage 3” together in reference to my own health instead of someone else’s was surreal. I had initially wanted to rule out colon cancer, which had factored into scheduling my first health check appointment. But breast cancer was nowhere on my radar.

I’ve often wondered how different my journey would have been if I had been able to make the first visit with my new primary care provider two years earlier, as I had originally planned to do. That initial appointment got postponed due to COVID. Maybe everything has worked out for the best in spite of that. If I had made that appointment back then, I might not have found a tumor two years ago and, as a result, might have put off getting another mammogram until it was too late, giving the tumor an opportunity to spread. So, things could have been much worse.

Tests and procedures…

Following my first appointment with my primary care provider, I had more tests and procedures done during that 14-month period than I’d had done in my entire life, including: 4 mammograms, 2 biopsies (breast and lung, the latter was benign), 1 cardiac stress test (which I failed), 1 echocardiogram, 1 ultrasound, 1 MRI, 1 CT scan, 3 COVID tests (required before surgery), 4 surgeries (1 lumpectomy, 1 follow-up on lumpectomy, 1 port-a-cath insertion, and 1 coronary angioplasty), 1 nuclear bone scan (2 if you count the one that I couldn’t complete because I discovered I was claustrophobic), 1 regular bone scan, 4 chemotherapy treatments, 20 radiation treatments, 1 endoscopy, 1 colonoscopy, 7 blood draws for diabetes monitoring, 4 blood draws for chemotherapy, 1 emergency room visit for an allergic reaction to the whey in a protein drink that had been recommended (it was listed as “milk protein concentrate” on the label, which I now know is another name for “whey”).

Cost…

Just imagine the price tag on all those tests and procedures, in addition to co-pays for the doctor visits. It’s understandable how people can tank their credit worthiness or file bankruptcy or even become homeless due to astronomical medical expenses. Although my financial experience so far hasn’t been quite so dramatic, I do still have expensive bills rolling in, and I've watched my credit score drop from 800 to the mid-600s as I've relied more heavily on credit to make sure my daily needs are met and bills get paid. 

For the first time in my adult life, I had not only met my annual health insurance deductible but also reached my out-of-pocket maximum. The chemotherapy infusions alone cost more than I earn in one year. And I went from rarely having even one bottle of aspirin in my medicine cabinet to having a few shoebox-sized bins filled with prescription drugs. Without insurance, I imagine I would have just taken my chances and hoped for the best. I am grateful to have good coverage and an employer who pays the premiums. Otherwise, I might not have agreed to most of the tests or treatments. And I have to wonder how many options would have even been offered if I had no insurance. I consider myself fortunate.

Side effects…

We’ve all heard the horror stories about nausea and vomiting caused by chemotherapy. Several of the medications in those bins include medications my oncologist had prescribed for me just to have on hand in case I experienced those side effects. So, I prepared myself for the worst. But I experienced no vomiting or nausea. Not even once. I consider myself lucky to have been spared something that so many others had to endure.

Following each of those chemotherapy infusions, I received dexamethasone – a steroid used to help prevent an allergic reaction to the treatments, reduce sickness during treatment, improve appetite, and reduce the immune response. They told me to expect some mild joint pain, which I shrugged off since I typically have a high threshold for pain. However, I was completely unprepared for the level of excruciating joint pain it would cause. For three days, every joint in my body felt like it was being pulled apart and twisted. Nothing offered any relief and I probably slept for a total of about eight hours off and on during that entire time. They cut my dosage in half after that first injection, and any joint pain I did experience from then on was mild enough to go mostly unnoticed.

Hair loss is the next side effect that most people associate with chemotherapy, and I did experience that one as expected. However, I didn’t just lose the long, blond hair on my head. My eye lashes and eyebrows fell out, too. While the baldness took a lot of getting used to, not having to deal with any facial hair was a bit of a blessing, and I actually enjoyed that part of the side effect. What I hadn’t expected was that the hair loss wouldn’t be limited to my head; I lost everything. No armpit hair, no hairy legs, well… you get the idea. I felt like a naked mole rat.

As my hair started growing back, I traded that bald look for what I referred to as “hedgehog hair.” Instead of blond hair, short wavy spikes of gray and white eventually replaced the baldness. Because it’s still so short, my wild hair does pretty much its own thing no matter how hard I try to tame it with a brush. It stands straight up on top and curls out at the back of my head. It’s not quite enough to keep my head from being cold all the time, but it has grown enough that I decided to finally ditch the “cancer hats” for good.

While the joint pain was on one end of the problematic side effects spectrum, extreme fatigue was on the other. Physical exhaustion set in after the second chemotherapy treatment and lasted for a few months. I’d get winded walking from one room to another and slept a lot more than usual. Then, just when I started feeling less drained of energy, the radiation treatments zapped me with another round of fatigue.

The level of exhaustion during radiation therapy wasn’t quite as debilitating as it was during chemo, but it was still enough to hamper normal activities. Other than fatigue, the daily radiation treatments were more of an inconvenience than anything else and did cause some mild joint pain. It also gave my right breast and armpit a fabulous tan that lasted several weeks.

Other cancer treatment side effects paled in comparison to the joint pain, fatigue, and hair loss; and they were more weird and annoying than they were troublesome. Some of those included skin irritations, yellow fingernails, and a few toenails sheering off. Another was the loss of taste. More accurately, everything tasted the same, like a combination of plastic and metal. Naturally, eating was not my favorite thing to do during this side effect, and I lost 17 pounds as a result during chemo. Best diet plan ever, but not one I’d recommend or opt to ever repeat.

With surgery, chemotherapy, and radiation treatments behind me, I recently started the next phase of cancer treatment: estrogen blocking therapy. I was told that the side effects would be similar to what I experienced during menopause, only worse. Since I didn’t really experience the typical menopausal symptoms, I figured, “How much worse could it be?” Symptoms like hot flashes, chills, night sweats, sleep problems, mood changes, and weight gain weren’t apparent right away, but I gradually started to realize that I was indeed experiencing all of them, specifically the hot flashes and mood changes. I feel grumpy most of the time now and really have to think before I speak so I don’t blurt out anything inappropriate or hurt anyone’s feelings. That struggle is very real. 

Complications…

If finding out I had cancer wasn’t bad enough, the powers that be had decided to throw a little coronary artery disease and diabetes my way too. Imagine some cartoonish gods lazing about on a group of clouds, plucking their harps, tossing a few thunderbolts, and debating amongst themselves. One says, “No, we can’t do that to her. That’s too much.” Then another responds, “Sure we can. She’s tough. She can handle it.”

Maybe I am tough, but I really didn’t need that fact put to the test. 

During my cancer treatment, I learned that an artery with “significant blockage” had also been contributing to my fatigue. My cardiologist recommended having a stent inserted to open up the artery and decrease its chance of narrowing again, helping to prevent a heart attack. Acting as a scaffold, that tiny mesh tube would stay in my artery, dissolving over the next few years, and restore it to a fully functioning artery. 

During the angioplasty, they discovered that three stents were needed instead of one. Since I was awake during that procedure, I could watch the large monitor and see my heart beating and the stent snaking its way to the artery. The most painful part of that was the insertion of a needle in my wrist that was larger than the needles used to draw blood. My recovery from that felt minimal, but I will be taking a blood thinning medication for a year and bruising will occur more easily as a result. I will probably bruise now if a mosquito lands on me, so smacking the life out if it will be entirely out of the question. I must learn to shoo it away nicely.

Neuropathy is another side effect that I’ll list as a complication, simply because it could have been caused by either diabetes or chemotherapy or both. The complication lies in not knowing which disease to blame and how long it will last. At first, my fingertips tingled as if they were cold, but warming them didn’t help. Then the same thing started in my toes, which rapidly progressed to the sensation of standing on sharp metal bristles, like I was wearing wire brushes instead of shoes, the kind of brushes used to scrub a barbeque grill. Eventually, my fingers seemed normal again and the bottoms of my feet felt okay, but the frequent numbness in my toes remains, like they're being clamped tight in a vice.

Perhaps the greatest challenge I faced as a result of the cancer treatment was trying to manage the persistent blood sugar spikes while dealing with all those side effects. In fact, chemotherapy has been known to spike glucose levels. At times, my glucose levels were dangerously high – between 350 and 400. The target range is between 70 and 170. Readings over 400 increase the risk of falling into a diabetic coma, and anything under 70 is just as bad. After a year of being on insulin and other medications, I’m finally starting to see more stable glucose levels, and my A1C has dropped from 9.2 to 6.9.

Another complication was finding transportation to and from appointments, especially when walking to the bus stops proved too taxing. Before my paratransit application was approved, I relied on the generosity of my support network, which probably got old for them pretty fast. Losing the sense of independence that owning a car provides or even being able to take the bus whenever I need to, has been the one non-medical challenge that has frustrated me the most. Fortunately, there are now more options with Uber and Lyft and paratransit. My thanks goes out to everyone who has driven me around!

Through it all…

Becoming more reflective about my life and my future could also be considered a side effect. Each day over the last 14 months blurred into the next. Looking back, the time seems to have passed in the blink of an eye. Yet, at the same time, it’s felt like the longest journey of my life. Naturally, I’ve made a few regrettable choices based on a presumed “death sentence” from the cancer diagnosis and the prospect of having to deal with lifelong diabetes management; but overall, I think I’ve muddled through this fairly well with the help of a strong support network and flexibility at work. Since I was able to work from home as needed, I didn’t have to worry about a loss of income in addition to everything else. I was and am determined to remain positive, which is not to say that I haven’t had any darker moments.

During my most reflective states, I lost the motivation and energy to do much of anything that could bring me joy. My writing came to a virtual halt, I dropped out of social events, and I stopped bothering to unpack from my move two years ago. Instead, I’d dream of traveling, of spending more time writing and reading, of sitting by the water and listening to the seagulls, and spending more time with family, of sharing my life with a golden retriever, of settling into a quiet home somewhere devoid of loud neighbors, freeway traffic noise, and intrusive odors from cigarette smoke and/or pot. Escapism became my unwelcome friend. I was convinced that I hadn’t accomplished anything in my life as a result of my lack of full effort and frequently asked myself, “What’s the point?”

When you’re young, you dream of your future and what you’re going to be when you grow up: what kind of job you’ll have, the car you’ll drive, your friends and family, the things you’ll accomplish, and the adventures you’ll have. As you get older, you become too absorbed in the mundane tasks of getting through the day, but you’ll keep dreaming about the kind of life you’d like to have and thinking about the future – a future that still feels so far away. If you’re lucky and able, you’ll plan that future and work toward it. If you’re determined, you’ll do whatever it takes to secure the future and turn your dream into a reality. Either way, that future will one day rear its ugly head and say, “I’m here and your time is almost up. What have you done with your life?”

I had wanted to be an architect since I was in grade school. That was my dream job, but I let people talk me out of it to pursue a "safe bet" instead, so I studied business administration. But other than writing, designing homes has always been my passion. I volunteered as a teacher's assistant just so I could study drafting in school, without receiving class credit, and continued learning as much as possible from books and videos throughout most of my adult life. I've designed so many homes over the years as a hobby, none of which will likely ever be built. I had replaced the dream of creating a house with simply owning one designed by someone else, but now even just renting one would be lovely. If my time truly is almost up, one of my biggest regrets is that I've settled for less than I deserve and gave up on a dream.

Maybe I've spent far too much time dreaming, only to have the possibility of my ideal future never coming to fruition, of having an earlier than desired expiration date stamped across my forehead, negating any hopes of ever having the kind of life I’ve always wanted. I hear the saying, “It’s never too late,” and have to wonder, “Is it really?” Then I’m reminded that I have to let go of the life I thought I’d have in order to make room for the one I do have. Cliché, but true. I have to focus on what's in front of me now instead of dwelling on the past and what could have been.

Despite everything, I am trying to remain positive. My support system helps a lot with that. And while I'd love to have an emotional support dog, I do have an emotional support teddy bear. Several, actually. But only one wears the uniform.

Do I wish my life had taken a different path, one free of disease, free of regrets? Definitely. But it didn’t and now I’m in rebuilding mode, trying to feel “normal” again, and to put the last 14 months behind me so I can move forward, onward to bigger and better things. I do believe I have a future, whether or not it’s the one I dreamt of my whole life. 

I am by no means planning to depart this world anytime soon. In fact, I plan to slip away peacefully in my sleep at the ripe old age of 108. If you’re still around then, too; please wish me a happy birthday before I go.

#BreastCancerAwareness  #NeverGiveUp  #CancerSurvivor  #LifeAfterCancer  #Pinktober