It’s been two years since I was diagnosed with breast cancer on February 3, 2020. It’s the call you will never be prepared for, no matter how strong you think you are.
Here I stand, two years on the other side of that day.
I am happy and healthy for the most part, but I still feel like part of me died during breast cancer treatment. The side effects of mastectomy, chemotherapy, radiation, and Tamoxifen took a toll so colossal it could only be felt in the aftermath. Over one year post treatment since finishing in October 2020, and I’m still adjusting to my new life. I still think about my mortality; I’m not sure when that stops.
On the flipside, there is immense gratitude, a carpe-diem attitude that won’t quit, and I see my life in a different, more appreciative way. I have lived a blessed life, and a second chance to live longer is the ultimate gift. Gratitude grows with hindsight, as we see the miracle of our life in all its glory in the rearview mirror.
It’s part of the “zombie paradox”, where I feel like the old me “died” in cancer treatment, leaving me feeling like a walking corpse of my former self in some ways (“zombie”), albeit extremely grateful to be alive and well (the “paradox”). Analogizing a breast cancer survivor to a zombie may sound dramatic and morbid, but it’s fitting for life post cancer-treatment. No matter how much you focus on the joy of being alive at all, you miss the old you. There are innumerable side effects. Your body has changed; your gait adjusts. Endurance wanes. Fatigue becomes redefined, as you feel you can never catch up on sleep. Exercise, which once came effortlessly, sometimes involves dragging your ass out the door kicking and screaming because you’re dog tired, but you know it’ll be good for you so you go.
It’s not just fatigue, but almost daily I battle with lymphedema. It began first in my thumb and forefinger, about four months after my mastectomy. I had axillary lymph node removal; 33 total nodes removed from my left armpit, 3 of which were cancerous. My fingers would swell from doing the dishes, playing guitar, cleaning – anything that required fine motor skills and dexterity of my fingers. I met with a lymphedema specialist who showed me some exercises and massage to do.
After dealing with finger swelling for a couple of months, my forearm started swelling. Then, my upper arm. It was as if it was traveling from my fingers to my ribs, where it has more or less ended now. My lymphedema is truncal, swelling around my left lower ribs. My arm doesn’t swell for the most part now, but if it gets bad, my upper arm will flare up.
I have several stretches and exercises I do throughout the day, lest I swell up and feel the painful pins and needles; lymphatic massage also helps, too. I love playing guitar, but I have to limit myself sometimes or risk having a painfully swollen forefinger and thumb. When I’m climbing uphill on my bike, I do my stretches – pumping my left hand open and closed as I stretch my arm up and down, for example. Anytime I sit too long – like a long car trip – it flares up; too much sun, heat, and overexertion will do it, too. Circulation is vital to fighting lymphedema, so going for a walk or doing some yoga always helps. There are so many ways in which cancer changes your life, and having to do less of what you love because of it is never fun, so I keep at my stretching and massage to fight my lymphedema.
I am pretty used to my side effects now, but I had the strangest health scare in the Fall of 2021. It started off with a tight left lower rib that was sore to the touch. It felt like I’d bruised it or overstretched it somehow, but I couldn’t think of anything that might have done it. It felt better after a week or so, but soon flared up again.
I could hardly stretch my left arm up over my head without feeling like it was caught on something. My lower left ribs felt like they were being tugged upon from the inside out. They were still sore to the touch.
I made a doctor’s appointment, and had an x-ray, which showed no fractures. They inferred that it was probably an interstitial muscle strain that had been reaggravated after the first time.
Another week or so passed, and it wasn’t getting better. I’d been stretching it, and it still felt like it was caught on something. I became concerned when I came across pancreatic cancer symptoms and the left rib pain it can cause. My doctor ordered a pancreatic cancer screening blood test, along with a spate of other tests, including. I was pretty anxious at this point, expecting the worst. I thought I might have pancreatic cancer, and I was bracing myself. Here I was, back to pondering my mortality, not that I’d ever really stopped.
Everything came back normal. I was enormously relieved, but still mystified. What was going on? My doctors were going to look into what tests might need to come next to dig deeper.
Soon after in early December 2021, I was lying on my back in bed going to sleep, puzzled by what was going on with my rib. I was feeling around my ribcage, for the umpteenth time, trying to feel for any abnormality, any sign that might explain what was happening.
Suddenly, as if out of nowhere, I felt a band of hard tissue below my rib. It felt like a hard rubber band, or an uncooked spaghetti noodle. Startled, I continued following the contour of this unknown mass, noticing there were three noodle-like bands of hard tissue, running parallel to each other on the left side of my abdomen, about 6cm down to my hip. I’d assessed this region before, and hadn’t noticed anything.
I ran upstairs to show Ron, who was still awake.
It almost feels like a tapeworm! I exclaimed. I was in a mild panic, asking him to feel what I was feeling. I laid down on my yoga mat on my living room floor, assessing these newfound masses. Could it be cancer? I wondered. What the heck are these things?!
It was the strangest sensation. It felt like someone had pulled guitar strings taut and placed a few on my left side. Could this be causing my rib pain? I considered.
While I was assessing myself and trying not to think the worst, Ron was googling my symptoms: bands of tissue stomach, feels like rubber band in stomach. Within minutes, he came across something that caught his eye.
You had liposuction when they did your exchange surgery this Summer, right? Ron asked.
Yes, I replied, clinging to a sliver of hope from his tone of voice. I could tell that he had found something.
There’s something called Mondor’s Cords. They can happen after liposuction in the stomach; they’re bands of tissue that develop after surgery sometimes.
I leapt up from the living room floor, hoping we had found the cause of the problem. Reading onward and looking at pictures, I was soon convinced I had them.
During exchange surgery, the old, temporary implants are removed; these are called expanders. Their job is to keep the skin expanded until you can have a semi-permanent implant. Radiation therapy can cause poor results on recent implants, so many breast cancer patients must wait for their real implants until after radiotherapy. When they do the exchange surgery, plastic surgeons often transfer fat from your abdomen by liposuction to supplement the implant and give it a more natural look and feel. Sometimes, the procedure causes inflammation in the veins, and the buildup of band-like cords.
They tend to go away on their own, but I made an appointment with my plastic surgeon just in case. I was able to take pictures of them and send them to him and my general practitioner, who said it was likely Mondor’s Cords. By the time the appointment came in early January 2022, they had gone away on their own. It happened over a series of days, almost as quickly as they had appeared. Knowing it was a fairly common side effect of plastic surgery made me feel better.
But another issue was building up, literally. For a few months, I’ve been experiencing stomach distention, early satiety, and painful bloating after eating small amounts of food. It started out subtly. At first I thought it was just the Tamoxifen I’m taking, which is known specifically to cause weight gain in the lower abdomen (“Tamoxifen Belly”). Tamoxifen has a slew of side effects – joint pain, hot flashes, fatigue, weight gain, irritability, to name a few. Irritability and lack of thermoregulation are the ones I notice most. I get both hot and cold easily, and when I exercise, I overheat quickly, sweating like a raincloud. It also saps your energy: I’m already struggling to rebound from chemo and radiation, but the Tamoxifen finishes you off.
I had gotten more or less used to life on Tamoxifen, but then, around October 2021, I had some odd pains in my pelvis. Suspecting a problem with my uterus, I saw my gynecologist for an exam and cervical cancer screening, which came back normal, but she was concerned about my symptoms.
She referred me for a pelvic ultrasound to assess the health of my uterus, since I’d been on Tamoxifen for a year. Tamoxifen is known to wreak havoc on the uterus, causing everything from polyps, cysts, fibroids, to uterine enlargement and thickening. Worst of all, it more than doubles your risk of uterine cancers; it is fairly effective at lowering breast cancer recurrence, however, so is considered the gold standard for hormone-receptor positive breast cancer adjuvant treatment.
I went for my ultrasound in November, and they found several fibroids, polyps, an ovarian cyst, along with an abnormal endometrial stipe, 18mm in size; this is one of the main indications of uterine cancer. An endometrial biopsy was ordered next. In the meantime, my oncologist said I could take a break from Tamoxifen, in case it was contributing to any abnormal cell growth.
I was pretty spooked. The silver lining, though temporary, was getting a break from Tamoxifen. Within a week, I felt more like myself again. My energy was up, my skin was glowing like it used to, and I felt happier overall. My voice was different. I was actually sleeping less soundly than I did before; on Tamoxifen, my head would hit the pillow and I’d be out, but now, it took me a few minutes to wind down, and I’d wake up easier in the night. My body felt like itself again, however, which felt amazing. I felt how I used to feel pre-cancer. It’s remarkable what estrogen can do – both good, as in feeling like my usual self, and bad, as how it can fuel cancer growth.
Taking that break really opened my eyes to how accustomed I’d become to the side effects.
When my biopsy day came, I was really nervous; I didn’t know how it would feel, though it had been described to me. I was bracing for intense pain. Of all the procedures and tests I have had on my journey, this was one of the most painful. It was as awful as it sounded: a scratching of the cervix to remove tissue. Ten seconds of complete agony, one of the most gut wrenching pains I’ve ever experienced. I lay still until it was over. Luckily, it was a quick process, but I immediately got hot and flushed from the pain, and felt lightheaded. They give you nothing for the pain, by the way.
Wanting to get out of there as quickly as possible, I changed clothes, used the restroom, and made my way to the third floor stairwell. I felt like I might actually pass out, so held the railing tightly as I moved downstairs. A kind woman sensed my distress and asked if I was alright; I barely eked out a Yes, thank you, as I continued my way slowly down the stairs. At least I’m in the right place if I do pass out, I reasoned.
I exited the building on the ground floor, walked a few paces from the entrance, and sat down on an inviting wooden bench with conviction. My uterus was in pain, like strong cramps, and I still felt hot and light-headed. I stripped down to a tanktop and jeans, amid the frigid December air, which didn’t even register on my maxed out internal thermometer. The fresh air brought instant relief, blowing relief all over my body. I took some deep breaths, and the tears followed soon after.
I was terrified. I’d made it this far on my breast cancer journey only to be possibly sidelined with uterine abnormalities, and my biggest fear, cancer recurrence. It was intense, and a familiar feeling of doom set in.
Not wanting to cause a hullabaloo by sitting on the bench and dramatically sighing like a child, after cooling off for a couple of minutes, I meandered to my car in the large parking lot. I reclined my driver’s seat and lay down for a few minutes to just rest in silence. I’d made it; the biopsy was over. Yes, it was as excruciating as I was warned, but at least I’d gotten it over with.
Then began the waiting period. This is always the hardest part; you’ve done the test, but what did it show? Is it going to be a life-altering diagnosis, a terminal Stage 4 diagnosis, or simply a fibroid problem? Your mind can’t help but run down all of the possible roads, considering how you might even start to adapt to a crushing diagnosis of terminal illness.
Just two days later, my results were in. The biopsy was normal; no cancer was detected. I was ecstatic to hear that news! It’s an indescribable relief. After a three and a half week break, I was told to resume Tamoxifen.
I was relieved, but my distended abdomen was getting worse. I was getting full after eating the smallest amounts of food: a handful of macadamia nuts, an apple, a slice of cheese. Whenever I did eat a decent meal, my stomach would get so bloated I look disfigured, and I would feel sick to my stomach like I might throw up. I thought it was my enlarged uterus and fibroids compressing my stomach, as many women have reported the same issue, but my gynecologist didn’t think they were accounting for the amount of bloating I was experiencing. She suggested having my gastrointestinal tract and organs examined. Something was clearly off.
My doctors ran a bunch of bloodwork, including a CA-125 test which screens for ovarian cancer, which came back normal, and then my oncologist ordered a CT Scan with contrast dye of my abdomen to get a clearer picture of what was happening. They ran an IV with contrast dye during the scan, which was done in less than ten minutes. The iodine contrast is a vasodilator, so it makes you feel warm, and tastes metallic.
It was also an interesting date: 2/2/22, a palindromic date of 2’s. It was also Groundhog Day, my maternal grandfather’s birthday (may he rest in peace), and it was the last day my life was normal. I was diagnosed on February 3, 2020; 2/2/20 was my last normal day (also palindromic if you drop the 0). Most of all, it had been almost 2 years to the day since my diagnosis.
Interesting numbers aside, I braced myself for impact: they might discover cancer during this scan, and if they do, it’s likely terminal. “Scanxiety” is a real thing; these scans bring so much worry. I went home and went for a nice bike ride with Ron.
Later that evening, the saddest thing happened. Around ten o’clock at night, Ron and I heard wailing from our neighbor’s house across the street. It was clear something terrible had happened. We ran across the street to check on them. Their two goats had been attacked and killed. One had a broken neck, and the other was having CPR done on it to try to save it. This is every pet owner’s worst nightmare; my heart broke for them. Seeing those goats was intense, and so sad; I felt so bad for their family as they had to experience such a tragic loss. Pets are family, livestock included.
I didn’t really know what to do to help, and perhaps I was a little raw from my own health scares going on. Someone yelled to call the fire department, so I took that on. I could help with that. I ran back to our house and called 911, who put me in touch with a woman from the Department of Fish & Wildlife. The fire department didn’t come, understandably; I’m sure no one was really sure what they could do to help at that point. But it was something to try, and try you must in an emergency.
Mountain lions are common where we live in the Santa Cruz Mountains, and it was assumed that one had jumped the fence, killed both goats, but then couldn’t carry them back over the fence. I felt so sad for my neighbors; what an awful thing to go through. It also reminded me, again, that our cat Beau is vulnerable as well when he goes outside, especially at night.
We didn’t sleep very well that night, but I can’t imagine how terribly our poor neighbors slept.
The very next day, two years to the date of my breast cancer diagnosis, I got the good news that my CT Scan was clear! This was huge – a major weight off my shoulders. I methodically looked through the list of organs – pancreas, liver, kidneys – and delighted at the “Clear” note next to each one. I cried as I let weeks of anticipation go. I felt physically lighter. The relief is indescribably palpable.
The one organ a CT Scan isn’t so good for, however, is the uterus. The CT is good for assessing the internal organs, and was a good test to rule problems with them out, but an MRI shows the clearest picture of uterine issues. As the tech noted on his report, Uterine imaging not well defined with CT.
I haven’t yet talked to my doctors, but I would imagine an MRI may come next to get a clearer picture of my uterus and the extent of my cysts and fibroids.
In the meantime, I can say with anecdotal confidence that the bloating I’m experiencing is related to Tamoxifen. It can’t be a coincidence that I went on it for a year, and looked pregnant at the end of it. When you have fibroids and an enlarged uterus, it can make you look five months pregnant, and after a meal, I can certainly look it!
It’s not so much the “looking pregnant” part that’s bothering me, though not fitting into all your jeans presents a problem, and darn it, I did always have a nice, flat stomach! The worst part is feeling sick, and not being able to eat very much. Everyday, my stomach hurts – a gnawing, wrenching pain. I have found myself at times in the middle of a trail, miles from my car, so hungry I feel like I could keel over, tempted to ask a complete stranger for food as I’d forgotten to bring any. As an athlete, this makes going for a run or mountain bike ride challenging. My energy crashes, as I don’t have much fuel to burn.
Now I’ve gotten in the habit of bringing a snack with me whenever I exercise, which helps, even if it’s just a few bites. I constantly feel like I need more food, though, despite not being able to physically stomach much. I am stuck in this yo-yo of being hungry and overly full, while never really getting enough to eat during the day. I am eating nutritious food when I do eat – nuts, fruit, yogurt, eggs, fish, vegetables – as I know I’m not eating enough. I love food and am usually a good eater!
Hopefully I’ll get to the bottom of this sooner than later. I know it’s not tenable to continue in such a pattern.
Two years post-diagnosis, I am not quite the same person as I was before, but many pearls of wisdom have amalgamated with that change. All the old cliches are still true: live everyday as if it were your last; seize the day! Have an attitude of gratitude.
Most of all, we are nothing without health.
I’ve grown more accepting of myself. I’ve always had a perfectionist streak, but I’m settling for good enough more often now. You may find a few errors in my writing – gasp! – but it’s more important to me that someone is reading this and relating to it.
What matters is to enjoy life, and cultivate love and kindness as much as possible. Who cares if I run slower, or need to take more breaks when I ride my bike uphill?
At least I am still flying downhill. I don’t take it for granted, whether snowboarding, mountain biking, running, or walking. No matter how many times I ride the same trails, they never get old, though I may.