breast cancer – Flow and Grace

My Two Cents: Some Advice For Supporting A Loved One Through Breast Cancer Treatment

I just want to talk to someone who will really listen.

During breast cancer treatment, that’s all I really wanted in terms of support from others. I wanted to be able to share my feelings and musings on life freely as I faced my mortality and tested my mettle in ways I’m still processing.

I just wanted to be heard; for someone to say, I hear what you’re saying, and that sounds tough. Tell me more. And then actually listen.

I really needed good listeners in my life, and fortunately, I had a few golden ones who got me through the thick of it, my husband Ron being number one, and family members. Now that it has been almost two years since finishing treatment, I’ve had some time to reflect upon the support and love I received. I am so grateful for everyone’s support, no matter the degree.

I also learned that there were some things I wish people didn’t say to me – not to attack anyone personally in my life, but to highlight some of the common themes that emerged in people’s comments. Inspired by other women’s posts about what not to say to someone going through breast cancer treatment, I am ready to write my own. I realize I may be repeating what has already been written by other cancer survivors, and it’s no surprise there are common feelings among all of us. I don’t want to come across as ungrateful, or judgmental, but this is how I felt. I’ve hesitated to share my thoughts as I don’t want to deliberately make anyone feel bad, but life is too short to hold back – something reaffirmed to me during breast cancer treatment.

Agree with me or not, if you’re ever so lucky to have cancer someday, then you can write your own list. This is just my two cents for supporting a loved one through breast cancer treatment.

Let’s start with what not to say or do.

1) Don’t play doctor.

When you are diagnosed with cancer, you spend most of your free time diving deep into research about your disease. You look at forums online, scholarly science articles, books, you name it. But you listen to your doctors’ advice, because they ultimately know more than you do (unless you yourself are a medical doctor with expertise on your cancer).

I was surprised by how much advice I got from people, whether it was a lifestyle change, an exercise regimen, energy work, dietary recommendations, supplements, or even my cancer treatment plan. Multivitamins, keto diet, intermittent fasting – you name it, it was probably suggested to me by someone. It’s funny how everyone becomes a nutritional expert through Google; I suffer the same pitfall sometimes, too. We get a little bit of information, read someone’s testimony to a diet or supplement, and we’re sold.

Diet is already a highly individualized thing. There is no one-size-fits-all, only what works for you. Though I appreciated that people were suggesting things out of love, it was kind of annoying. Did people think I wasn’t already eating healthfully? Did they assume I hadn’t already asked my doctor about anything special I should be doing? Everytime someone made a suggestion, it felt reductive, as if they were reducing my entire cancer – which is colossally intimidating – down to something so simple as a dietary change; if I just changed one thing in my diet, ate this one food, took this one supplement, that would be the game changer to kill my cancer and keep it from coming back. It was over simplistic, and frustrating.

I never make suggestions to people about what they should or shouldn’t eat. When I’m offered alcohol or meat, I simply say, No thank you, instead of charging into a rant about how I don’t drink, or why you shouldn’t eat meat. I appreciate when people do the same for me.

And please don’t tell me what my survival odds are, or what my risk of recurrence is. If you know about breast cancer, you know it’s not a one-size-fits-all prognosis. There are multiple variables to consider. When people tell me, “You have a 90% chance of survival at 5-years”, I want to pull up all of the bookmarked articles I have from NCBI to prove them wrong. No, I don’t have a 90% survival rate. My recurrence risk is about 50% over the next 15 years, and if it comes back, it will likely kill me, and it’s most likely to recur around the 5-year mark. A young age at diagnosis, large tumor size, high Nottingham grade score, and lymph node involvement all put me at a high risk for recurrence.

That’s why my doctors advised me to be as aggressive as possible in my treatment: bilateral mastectomy with axillary lymph node removal (I had three cancerous nodes in my left axilla, or armpit), chemotherapy, radiation, followed by 10 years of Tamoxifen, since my cancer was hormone-receptor positive. It wasn’t a “choice” for me to complete all my treatment, as people like to say sometimes; it was what the doctors advised me to do, and I heeded their recommendations.

2) Please don’t tell me that you understand, unless you’ve had cancer yourself.

Sorry, but unless you’ve lived through cancer yourself personally, you do not understand because you cannot understand. I know people are just trying to be compassionate, but it was the most disingenuous thing I think I heard from people. All I felt like saying when I heard that was, NO YOU DON’T! And the fact that you think you understand only shows me how little you understand what I’m going through.

I know I sound bitter; again, unless you’ve lived through cancer yourself, you can’t understand. I don’t blame you; it’s not your fault you’ve never been so blessed to fight for your life with a cancer battle. But please, don’t tell me you understand. It doesn’t matter that your friend, mother, second cousin, or neighbor down the street had cancer; that you sat by a loved one’s side as they sadly passed from their battle. You may understand parts of the experience, but you can’t understand exactly how someone with cancer feels. Nothing can prepare you for it, and it’s something you can’t know until you experience it. Even if you’ve had cancer yourself, it’s still a different journey than mine. Respect the process and uniqueness of everyone’s stories.

3) Please don’t placate with platitudes like, You’re going to be just fine! It’s God’s plan!

There is no way to know the future, nor determine whether my cancer treatments worked; only time will tell, and until I die, I’ll never know for sure. Though platitudes like this are common during a difficult time, it made me uneasy anytime someone said this to me. I’ll never forget an encounter at the radiation clinic; I met a woman in the changing room, and we made small talk while waiting for our appointments. She was getting radiation for her jaw; I was having my left chest wall and clavicle treated.

When she left for her appointment, she turned to me and said, You’re going to be just fine. I can feel it.

I smiled politely and thanked her, but I didn’t particularly like hearing that. How do you know I’m going to be okay? You just met me; you know nothing about me. You can’t predict the future, I thought.

Everytime someone told me I was going to kick cancer’s ass, or was going to be just fine, I cringed a little inside. Again, I’m not trying to attack people for sending me well wishes, but I need to be honest about how it felt to be on the receiving end. Cancer humbles you, and teaches you that you really aren’t in charge of your body after all. We think we are – with our dietary choices, exercise, and lifestyle – but ultimately, cancer can fester silently inside you for years before emerging as a volcano on your life, covering everything with scarring lava, filling the skies with the choking ash of death. You learn a necessary fear and strange respect for it, knowing it is now the boss over you.

You don’t talk sassily to it; you don’t pull the tiger’s tail. You never beat it, especially since it can always come back. I don’t call myself a cancer survivor, because I don’t know that I will survive it. I only know that today I am alive, and feel mostly well. But as I learned before, it could all change in the blink of an eye. Therefore, I never assume that I’m going to be just fine.

4) Don’t ask: How do you know your treatment worked?

This is one of the most difficult questions I get asked. It’s a fair question, really, but a difficult one to answer. The nurse at my port-removal surgery asked me this question; I was shocked he didn’t have the wherewithal to realize what a stupid question it was to ask someone who’d just lived through a double mastectomy, four months of chemo, and five weeks of radiation.

What the hell do you think I’ve been thinking about this entire time, everyday? What do you think my life is like now that I get to live with this dark shadow on my shoulder following me around, everyday, eternally threatening to kill me?! I mused in my mind.

Did it work?!

This is the essence of my newfound anxiety about recurrence that I have to fight from dominating my mindset everyday. I wish there were a guarantee that it worked for the long run, but only time will tell.

I will never know the answer until I die – from cancer, or something else. I’ve been asked the same question by other people, and I know it’s only an innocent, warranted question. I would love to say, Yes, but then if it comes back, it clearly didn’t work. This is the limbo you are stuck in as someone who has lived through cancer.

This is why I call myself a breast cancer zombie, not a survivor. I feel like a zombie of my former self, walking around in the shell of my old body, my old identity, echoes of songs sung years ago reverberating in my nostalgic heart. Glory Days is an apt soundtrack for me right now, I begrudge. Ask me how I’m doing today, that’s fine, but please don’t ask me how I know my cancer treatments worked. It only reminds me that I’ll never know for sure, and how unsettling that is.

5) Don’t make it about you.

This is the one time in life where you should not wait for your turn to speak; where you should not think of that one time you had a health scare that turned out to be fine, ready to share it as if you know exactly what we’re talking about (see #2). I appreciate a good back-and-forth dialogue, but please don’t appropriate our suffering by acting like you know it first-hand.

Sometimes when I opened up with people, it was as if they hadn’t heard a single word I said and were just waiting to tell their own sob story, as if trying to one-up me. It’s not a competition. I felt dismissed every time I tried to share my experience only to have the conversation flipped back away from me, and refocused on someone else. Sorry, but I don’t want to hear about your friend I’ve never met who had cancer, or how Angelina Jolie had a prophylactic mastectomy, and how that must be like what I’m going through (not in the slightest).

People on the outside looking in think all of us cancer patients have basically the same experience, and though there are universal themes (feeling alone, terror, immense gratitude for the simplest of things), everyone’s story is uniquely their own. When people tried to say they understood because they knew someone with cancer, it only made me feel like they weren’t actually listening to my story.

I just wanted someone to talk to. Don’t judge how we’re coping with cancer, or for being who we are. Don’t judge us for being selfish for once in our lives. Everyone deals with adversity in different ways, and what works well for one person doesn’t translate to everyone else. There is no one right way to deal with a cancer diagnosis and the ensuing treatment. Some people questioned how I was dealing with it, thinking only of how they would approach the situation if they were in my shoes (again, making it about themselves). Shouldn’t I be meditating everyday, or seeing a therapist, or taking that one special supplement that will fix everything? Am I “thinking good thoughts”, and visualizing my healing?

When I was first diagnosed and told a few teachers at my school, one of them told me they’d talked about how they could support me during treatment. Expecting your usual meal-train idea or something similar, I was taken aback when she said, “Someone said they didn’t know how to help you or what you’d want because you’re so quiet all the time”.

All I heard was that being an introvert automatically excluded me from receiving support from my colleagues, and a subtle dig telling me it was my fault if I didn’t get any support from others. And then, I thought, Have you ever tried asking me a question? I have a lot to say – if you actually listen. Maybe it wasn’t that I was so quiet, but that I didn’t want to waste my breath if someone wasn’t listening. My colleagues were supportive of me during treatment, coming together with generous donations and cards. For whomever had thought I was too “quiet”, there were several who were truly there as friends, checking in on me often, which meant the world to me. I could have done without hearing that comment, however.

During treatment someone else asked how I was doing so well amidst everything, that I was making it look easy; was I really doing as well as I seemed to be? You can’t win with everyone. You’d think people would want you to be happy and deal with it as best as you could, but sometimes it felt like people were disappointed I didn’t crumple to the ground in total surrender to the gravity of my experience.

Staying busy during treatment with regular time outside in beautiful places was my therapy; that precious, invaluable time kept me focused on the big picture – that life is so much more than my little life, scared as I was for it. Leaning into the beauty of the world, and learning about it, kept me inspired and helped abate some of my hardest days, but it didn’t diminish the difficulty of every step of treatment. When someone says it looks like I had an easy time with cancer, I want to remind them of all the times I cried, felt alone, or felt terrified that my death was imminent. Just because I remained committed to outdoor exercise during treatment doesn’t mean I didn’t suffer. Before cancer, time outside – paired with the endorphins of a good workout on my bike, two feet, or otherwise – had always been my best medicine. I’ve known the secret of movement through nature all of my life, and it definitely helped me through my treatment. It’s part of my identity.

But it’s only what worked for me. That doesn’t mean my way is the right way, the best way, or the way everyone going through cancer ought to approach their treatment. I would never push my lifestyle onto someone else, as I wouldn’t expect anyone to force their lifestyle upon me. Thus, when going through a hard time, let people deal with it how they know best. Don’t judge, don’t question, and don’t give unsolicited advice about how we ought to be dealing with it. Just let us deal with it how we know best, even if it’s not what you’d do.

#6) This last year was SO hard…

I know this one may make me seem cold. I realize these last couple of years were really hard for people, in many different ways – some obvious, some subtle. But unless you had cancer yourself, had COVID-19, lost a loved one, or had your life imminently threatened – beyond the risk of catching COVID – I would beg you to reconsider your blessings. All I heard people talk about is how hard 2020 was, or 2021 or 2022 for that matter. When I heard people complain, it made me wonder if they knew their audience; if they’d actually seen what I’d been through? It made me want to ask:

Would you rather have had drains hanging from your chest wall for nearly three weeks after you had a bilateral mastectomy with 33 lymph nodes from your armpit removed? Would you rather have sat in a chemo chair for five hours at a time, cold-cap freezing your head only to barely save some of your hair, over a four month period?

Would you rather have endured five weeks of daily radiation to your chest, knowing every treatment increased your risk of heart disease, and permanent fibrosis of your lung tissue?

Would you rather have pondered your death on a daily basis, genuinely wondering if this year might be your last on this planet?

Would you rather have evacuated your house for 11 days while a wildfire threatened to burn it all down? Would you rather have had to teach remotely for distance learning, having to rework all of your lesson plans to be delivered over Zoom, without much thanks from parents or students? Then again, would I have rather had a loved one die from COVID? Gotten COVID myself? Fought for my life on a ventilator? Lost my business? Had to bury a loved one in a mass grave?

Everyone has a story to tell from the pandemic, but I realize many had it way harder. I try not to complain about how “hard” treatment was, despite it actually being quite challenging. The lesson all along has been to take what you’ve been dealt, be grateful for what you have, and try to make the most of it.

Now, the #1 thing I would recommend to support someone going through breast cancer:

I’m sorry. That sucks. I wish you nothing but love and courage to fight this. Then, put your phone down and ask, How are you?

And really listen, compassionately. That’s all. No need to compare battle stories, or try to fix it.

Give yourself fully to the moment. Don’t wait for your turn to speak, or to share your own experience with your Aunt So-and-So who had a scare on her latest mammogram, or your friend who died from Stage 4 breast cancer after having celebrated being “cancer-free” for five years.

Listen with an open heart. Ask questions. Care. Put yourself in our shoes, and imagine how you might feel going through it. Don’t shy away from us when we’re going through our darkest, hardest moments. Be a good listener.

If you can’t handle the depth of such subject matter, then thank you for supporting me in ways you know how, like sending a card, flowers, or delivering a home-cooked meal. Some people don’t want to talk deeply about mortality, and that’s okay, but I really appreciated those who went there with me.

Adversity will reveal who truly has your back in life. At this point in my life, I don’t want to waste time with people who don’t care to ask how I’m really doing, who dismiss me. Some people I’d see after months since treatment wouldn’t even ask how I was doing, or about what my experience might have been like. Again, some people don’t want to talk deeply about mortality, but it was flabbergasting to be greeted as if everything was the same.

Conversely, I had some of the best conversations of my life while going through breast cancer treatment, catalyzed by the indisputable realization that my life as I knew it was over, and that my death may be more imminent than I had imagined. There’s a lot of deep issues you face when pondering your mortality, and talking with your loved ones about them helps.

My husband Ron was my de facto therapist, best friend, husband, house cleaner, personal masseur, personal shopper, and chauffeur, but the thing I appreciated most during treatment was his good ear. Having someone to talk to about the roller coaster of emotions I was experiencing made me feel far less alone, even if he couldn’t exactly understand what I was going through. That was the beauty of his gift of listening: he didn’t pretend like he understood, or knew the perfect thing to say, or try to fix it. He just nodded and listened with emoting eyes, an open heart, and genuine love for me. That is a quality about him I’ve always cherished, but was the biggest present; not to be outdone was my Dad, who visited regularly during treatment, and leaned into every conversation with an open heart, as he did all my life before passing away from cancer himself in March 2022.

I had some amazing conversations with other family and friends, too, my sisters and mom. Sometimes it was in-person, sometimes over the phone, sometimes through email or social media. However it happened, every connection I had with someone helped me feel better. I could not put a price on the value of those who were good listeners. To be seen and heard is really all I needed from my loved ones at a time like this. I realize I may sound bitter, but if you’re ever so lucky as to get cancer, then you, too, can write your own list of things you wish people wouldn’t say to you.

May you never have that chance.

Lastly, send a card. It’s cancer, not the flu.

That’s just my two cents, though.

Two Years Post Breast Cancer Diagnosis

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.

Ride on.

Exchange Surgery & Summer 2021

Sir! Excuse me, Sir!

I ambled to the next window to check in for the downhill mountain bike race at Snow Summit in Big Bear, California. It was a hot, sunny day, with a long line of people waiting to buy tickets. I’d been told by a kind employee to go to a particular window, and that I did not have to wait in that line.

Again, I heard a shout:

Sir! Excuse me, Sir! Did you just cut this whole line?

I didn’t know who she was shouting at, but it sure as hell wasn’t me…or so I thought.

A few seconds later, she approached me.

Sir! With just one look in my eyes, she realized the mistake she was making.

Yep, I was being called Sir.

I’m sorry, Miss, but did you just cut this whole line? She interrogated.

I couldn’t believe it. I’d been told specifically to go to this window, and now I was being called a guy. Awesome start to my day.

I was told by that employee over there, I began, pointing to the nice lady, to go to this window to check in for the downhill race.

She immediately said I was right, and was in the correct spot. Yelling back at the long line of people waiting to buy tickets, who had taken interest in seeing me get schooled for “cutting the line”, she said:

It’s okay everybody; she’s a racer! The sarcasm in the way she said the word racer was a taunt to the people in line, a few of whom laughed and mocked, Ooh, a racer!

The lady walked back to manage the line, and I continued with my check-in. My mood changed from excited to sour pretty quickly, especially being called a dude in front of all those people, and being accused of line-cutting. I’m a rule follower and I don’t believe I’m more important than other people; I will wait my turn, no problem. But if you’re doing a race, and they tell you to go to a certain line, that’s what you do.

I was angry, and dejected. I know how awful my hair looks right now, short and in the mullet stage. This is the hair of someone who’s lived through eight double-dose chemo infusions for breast cancer last year. I know my hair looks crazy, but my body does not look like a man’s!

I decided to let her know how I felt. I walked back up to her and said:

That was a pretty bad way to start my day here at Snow Summit – being called a guy in front of all of those people, and then being accused of line cutting. You were kind of aggressive about it too, as if I’d done something wrong. It might help you to know that my hair is so short and crazy because I went through treatment for breast cancer last year. I know how bad my hair looks. So you calling me out in front of everyone was a really crappy way to start my day.

She apologized, genuinely from what I could surmise, and I felt better saying something to her, in front of all those people in line who’d laughed at me. As for those guys, I just scowled at them. The hell you looking at? I sneered under my breath.

It was a bad start to my day, and after getting on the chairlift, I admit I cried. Sometimes I just want to escape from the world, and situations like this. Of course I know how bad I look right now; I am reminded everyday when I look in the mirror of the woman I am no longer. I have felt uglier than I ever have over the past year. It takes a toll on your self esteem. I am already feeling so down about how I look, to be called a dude reminded me that even if I finished cancer treatment, I am still dealing with its ramifications in so many ways. Having someone else call it out stung. It was similar to seeing that old colleague in the market by my house who had gasped Your Hay-ER?!

It wasn’t that the employee was an evil person for mistaking me, but that I was already so sensitive about my short hair. The usual, more confident me would have shaken out my long hair in a model-like fashion, saying, Excuse me, M’aam? I don’t see a Sir anywhere around here, batting my eyelashes for flair.

But the current Katrin? I already feel lower than normal, anything coming at me feels like a tsunami. I wasn’t so angry at her for calling me a guy, but I was angry about the situation in general: angry that I got breast cancer; that I ultimately lost my hair, albeit lucky not to lose it all at once because of the cold-cap. I am still dealing with a lot of anger about the entire thing – all of my breast cancer experience, not catching it sooner, etcetera…

I let myself have a quick cry, alone on the chairlift, thinking to myself, Watch me beat half those dudes down Miracle Mile.

I had a great first run down Miracle Mile, one of my favorite trails at Snow Summit. It had been a couple of years since I’d ridden there, but I knew the trail well. I was a little distracted by what had just happened with the security guard.

All was going well until the very last jump; I hucked it fast, forgetting it has an off-camber landing that you can’t see from the approach. I saw that I was going to land on the slopeside, not the flatter side, and came down in a somewhat controlled slide out from my jump. I abraded the hell out of my right arm, and of course, wasn’t wearing elbow pads that day. I was otherwise okay and had managed to slide out of it alright, but my arm was quickly bleeding.

I knew I’d hit hard. I went to the bathroom, and, trying not to gross everyone out, rinsed out my arm. I had scrapes and abrasions from my forearm up to my shoulder, and I could see a couple of deep gashes that had split the skin open. Worried I might have broken it, I decided to see the Medics on site.

They dutifully cleaned out my abrasion, and said it was up to me about stitches; it wasn’t so long of a gash, but it would be a slow heal without them. They dressed my wounds and advised me to see a doctor the next day if pain increased. They did some stress tests on my arm, which didn’t show any immediate signs of fracture. I felt like I was basically okay, save for weeks of healing from my abrasions to come.

I thanked them for their time, and took a minute to sit outside on a park bench in the shade. Here I was at Snow Summit, just an hour ago so excited to ride, and now I was hurt – physically, and emotionally. I felt defeated.

I knew right then and there that the best remedy was to get another lap in. I got back on the chairlift, rode up to the top, and did a second lap down Miracle Mile. This time, I angled the last jump better so I could land in the flatter spot, not hillside. I was jazzed. I felt renewed. Forget being called a dude, and forget my throbbing arm! More importantly, I was happy. I wasn’t going to give up after that crash.

I did a couple of more laps, finishing the day feeling good and confident. The race was the next day, and I felt ready. I had a great dinner with my awesome Dad, who came to join me in Big Bear for the race, and went to bed early.

On raceday, my arm was certainly hurting worse, as I would have expected. Just the slightest vibration from holding onto my bars made me wince. I started questioning whether I’d be able to finish the race it hurt so badly. Feeling unsure of my situation, I lined up toward the back of the starting line, as I didn’t want to slow anyone down should I need to pull off the course, or possibly crash.

This turned out to be a mistake. I ended up having to pass two riders, which is always sketchy during a race. There wasn’t a good spot for them to pull over right away, so I lost some time waiting for the space to pass. This picture sequence captures it perfectly.

I ended up with second place for this race, Open Women 40+, 23 seconds off of first place. I wondered over and over whether I would have made up that time if I didn’t have to pass, and it was a reminder to me that no matter the injury, you’re always going to give it all you’ve got. I should’ve lined up toward the middle, at least. I was happy with the race, though, and I certainly like the format of a Downhill race better than an Enduro race, which I would tackle the following weekend.

First, I would head back home, only to leave for a couple of days in Big Sur the next day to celebrate my fifteen year anniversary with Ron on the Summer Solstice, June 21. I love that our anniversary is the longest day of the year; quite apt for us! It was one of those perfect trips – calm, warm weather, no fog, just pure bliss. We love meandering down Highway 1 and exploring this gorgeous coast. I feel so lucky to live so close. I love Santa Cruz, but Big Sur is exceptional.

A few days later, I took off for China Peak, where I’d race the California Enduro Series Enduro race. I was going to do the Expert category, which would require climbing twice, but knowing how I’ve been struggling with endurance and shortness of breath lately, I changed categories to Sport, which only had one climb (which was still a killer!).

On practice day, it was super hot, and the lines were equally long – about an hour just to get on the chairlift. As I’ve become somewhat of a vampire since radiation, only able to tolerate periods of direct sun for so long before I start melting, despite still loving every ray, I only got one practice lap on Stage 4, my favorite run. I just couldn’t stand in that long line, in the beating sun. I’d raced here in 2017 and 2018, so I knew I could ride the course, but obviously it would have been better to preride the entire course.

Long Lines at China Peak Enduro Practice

I went for a beautiful hike among alongside a riparian zone through burnscar near Huntington Lake, from the Creek Fire in 2020.

On raceday, I had my usual nerves and stomach ache; this is one thing I hate about racing, and haven’t learned to quell, yet. We started off with the climb, getting it out of the way in the morning, before it got really hot. I stopped to take many breaks on the way up, feeling the altitude with every foot gained.

My confidence waned as I grew more tired; starting off the race with this long climb took most of my energy. I felt fatigued, which is the worst way to feel when you’re about to race. I didn’t push too hard, and just focused on completing the race. I crashed once on each stage; not badly, just slid out in the loose, deep corners. My handlebars got knocked crooked twice after falling, which made for an amusing finish to those stages.

It was a stacked category of 16 women in my Sport category, and alas, I was eleventh – ouch. Just like the last Enduro race I’d done at Exchequer, I’d landed toward the bottom. This was my first California Enduro Series race I’d done that I hadn’t made the podium. I miss the days of being fast and placing well, but my body is doing the best it can post-cancer treatment. It was a beautiful trip, though, and I enjoyed hanging out with everyone on the mountain.

With my exchange surgery looming on the horizon for July 9, I knew I only had a week or so to seize the Summer before I’d be on a mellow schedule for a few weeks as I healed from surgery. Thus, a couple of days after I got back from China Peak, I headed back up the hill to Downieville for a couple nights of Yuba River heaven, and mountain biking.

I also did something I’ve always wanted to do: hiked up to the Sierra Buttes Fire Lookout. This is about 2.5 miles from the parking lot at Butcher Ranch, gaining about 1,500’ of elevation in that length. It’s a good hike up, about an hour, and it went fast coming down.

The fire lookout is like being on top of the world. After hiking up to the peak, you ascend multiple stairs up to the lookout, which is a small room fit for one or two people to play sentinel. The views are panoramic and expansive, with Mt. Lassen visible to the North, and multiple geologic features popping up in all directions. The dominant rock type is quartz porphyry. I was awestruck. Unfortunately, I watched as the Beckwourth Fire Complex simultaneously grew to the East, giving this location its apt name.

It was one of the best days I’ve had in a long time: mountain biking in the morning, Yuba River swim in the afternoon, with a sunset hike to the Sierra Buttes Fire Lookout in the evening. I slept like the happiest baby there ever was that night. I just love to play hard outside during the day! I rode Northstar the next day, which is always a rip roaring good time.

The next week, I went back up the hill for a couple more days of mountain biking at Northstar, spending the night on the North Shore of Lake Tahoe. I had so much fun I didn’t want to come back down the hill, but I literally had surgery the next day! Here I was sitting at Northstar, all my gear on, on the phone for my pre-op appointment, then minutes later flying down Livewire. It was an awesome way to spend the day before surgery.

When surgery came on Friday, July 9, I was ready. While my expanders were somewhat okay, they always had a temporary feel to them, and certainly didn’t look the way I wanted them to. I was reminded every time I looked at them of breast cancer. I didn’t feel so confident.

Surgery went well; about two hours later, I was waking up in the post-op room. There were no drains this time, as there were in my initial mastectomy and lymph node removal. The pain was almost non-existent. I went home that day, and stayed up until evening, puttering around the house as usual, minus any heavy lifting. I was really blown away by how easy the surgery felt! He had done some liposuction from my stomach to contour my new silicone implants, and my stomach was quite bruised and sore for a week or so, but aside from that, I felt fine. One of the hardest parts was not being able to sleep on my side for the first few weeks, and of course, not being able to go for a mountain bike ride, or run, or surf. Basically, the first few weeks you’ve got to take it easy. I always miss my runner’s high when I don’t exercise.

As I did after my first mastectomy, I walked a lot. I went to the beach almost everyday, and went for long hikes. It is a saving grace when you’re healing, and eternally proves itself as such. I read, did crossword puzzles, watched Netflix, and let my body rest.

Ron and I went down to Big Sur for a couple of days, staying the night in San Simeon. We are really enjoying ourselves in this stunning landscape! I’ve always visited this part of the coast, but lately, it’s emerging as a revered Eden for me. I feel drunk on its beauty, albeit I haven’t been drunk in over eight years. It is intoxicating, aesthetic perfection.

I even made it through a claustrophobic wooden tunnel to get to Partington Cove. It wasn’t overly scary, but I did jog through it to get it over with quickly! It was a bit spooky for me, but after everything I’ve been through with cancer, doesn’t pare in comparison.

The best part about this trip? I saw California Condors for my first time! There were three flying among a group of vultures. I quickly got my binoculars from the car to confirm their identity, but their giant size set them apart instantly. I am an avid birder, and have long wanted to see one of these giant, endangered birds, of which there are only some 440 left in the world, with less than 300 in the wild. I was so happy I cried! It was momentous.

Two weeks after surgery, Ron and I headed up to Lake Tahoe, where my mother’s friend has a cabin that she rented out for five nights. We spent five blissful days in Meeks Bay with my family, soaking up every second. Lake Tahoe is a magical place! We swam everyday, hiked, hung out with each other, and just dove into it. It was one of the best vacations I’ve had in a long time! I’m so grateful we were all able to spend that time together. It was priceless.

Now, I’m in my last week of Summer vacation. I am happily back on my bike, three weeks out from surgery; it feels heavenly!

We’ll start school on Wednesday, August 11, and finish on May 26. I’m excited to start this new school year. After last year, with distance learning until March 29, 2021, I think the kids are, too. With the Delta variant rising, I hope we are able to carry out our plans for full-time, in-person learning without any interruptions or returns to distance learning. If there’s anything we’ve learned from this pandemic, however, it’s that we never know what the future holds.

As my Summer comes to somewhat of a close, I am immensely aware of the difference between this year and last year. Last year, I was going through chemo. This Summer, I got to focus on play. Having my exchange surgery was one of the final puzzle pieces to completing my breast cancer journey, though I know it may not be the last; life will always keep you on your toes! For now, I celebrate this milestone. I feel more like myself again. I am really happy with the results. It’s fun to put on a dress and feel good about myself. I am so grateful to live in a time when this kind of treatment is available – from my initial mastectomy, to chemo, to radiation, to the Tamoxifen I take daily, to this exchange surgery, which proved to be more than just a physical process, but an exchange of diffidence for confidence.

2020 Closure

2020.

Just say the year, and everyone has a story to tell. Life amid a global pandemic has stretched us all in new and, to use one of the most popular words of the year, unprecedented ways.

As the year comes to a close, I look back and see a fork in the road, etched deeply into my body and soul. This was the year my reality forever changed, from the initial shock of breast cancer diagnosis in February, through chemotherapy and radiation, and now, recovering from months of treatment while adjusting to life on Tamoxifen.

2020 was the year that my life as I knew it was pulled out like a rug from under me, flinging everything I knew and cherished into jeopardy. This was the year I learned, with all-encompassing certainty, that I am going to die – someday, but that day could be a lot sooner than I’d always thought.

Conversely, 2020 was the year I was reminded how much I loved my life, and how grateful I was for it. My patience and strength were tested incessantly, but my appreciation for life deepened, including its fleeting nature. We never know how much time we have, but when cancer comes along, it feels as though a clock is set on a countdown inside of you. Time is eternally precious, each day an opportunity you don’t want to waste. Opportunities abound in this world, regardless of covid or cancer. This year has delivered many chances for growth, reflection, and recalibrating gratitude, and as the year comes to a close, I’m focusing on all of the good that has persisted despite very real and trying challenges.

Astronomically speaking, it’s been a banner year. From the pink supermoon back in February, timed perfectly with my diagnosis; to the Eta Aquarids meteor shower; to the awesome comet Neowise; to the streaking fireballs of the Perseids; to the conjunction of Jupiter and Saturn lighting up the sky recently. There’s been no shortage of wonder and marvel to help put things in perspective. I’ve probably been out stargazing this year more than any other, and it’s been a powerful antidote to self-pity.

It’s also been a fantastic year for beaches and sunsets. I’ve spent more time at the beach this year than any other, even when I used to live a half-mile from the beach. The arcing horizon of the ocean has been an escape, comfort, and source of peace for me. I can spend hours at the beach carefully exploring tidepools, and watching the light play off the water.

Aside from a few weeks off my bike after my mastectomy and lingering fatigue, it’s been a stellar year for mountain biking. It’s been my main outlet, strengthening my body and mind. The freedom of flowing on two wheels, gracefully through the forest, is definitively therapeutic; hands-down the best anti-depressant I know of.

Most importantly, it’s been a remarkable year for gratitude. I love my little life with grit and passion, and I feel exceptionally protective of it after going through treatment. Sure I’d still like to make more money and have a bigger house, but I feel so lucky to have what I do. All I want is more time doing what I love, living my life with the people I love. More time on my bike, more crossword puzzles, more birdwatching; more going to the beach, playing guitar, snowboarding, dancing around my living room. More time with loved ones; more fun.

My husband Ron and cat Beau are beacons of joy and love; my family and friends a sea of warmth and connection. I am so grateful for the kindness, compassion, and generosity extended to me this year by so many. Some people really reached out, and it meant the world to me. My family, my sisters – calling me often to check up on me, and truly listening to me when I spoke, filling me up with comfort and love; my father’s regular socially distanced visits during lulls in the pandemic, always emotionally close to home; my mother and stepfather visiting on the front porch just to see me for a short visit while we could. My in-laws, whose love and care were steadfast. Some friends, and people I’ve not even met in person yet, only online, stepped up to show support, which moved me. I appreciate anyone who genuinely wished me well and took the time to extend that concern this year. Thank you to everyone who showed me love and empathy!

I wish the love of family and friends could cure cancer, but ultimately, I have to remain vigilant about my health going forward. I worry about recurrence everyday. My lymphedema, which had recently all but disappeared from my left upper arm, has come back a little, this time mostly in my truncal region, swelling around my ribcage. I continue to do my daily exercises and stretches, hoping to keep it at bay.

As I wrote about in my last post, I am having a hard time with Tamoxifen. I’m feeling better since, knowing that Tamoxifen is at least partly to blame for my blues, and have an appointment with my oncologist next week to discuss my side effects. I joke that Tamoxifen makes me a TamoxiMonster, but the sad reality is that it has made me feel depressed, fatigued, cranky, and my joints and leg muscles sometimes ache. My temperature regulation is shot; I’m either cold, or raging hot, tearing off clothes as I’m climbing uphill on my bike, sweating like crazy. I’m thirsty all the time, peeing all the time, gaining weight, irritable, and just overall not feeling like my old self. My old self: something I’ll never have back. Though I’m still the same person, a line in the sand has been dug so deep, there’s no going back to the innocence of youth, of life pre-cancer. Turning forty this October just sealed the deal.

As 2021 nears, I am reminded of the Serenity Prayer: accepting the things you cannot change, having the courage to change the things you can, and the wisdom to know the difference. This couldn’t be a more apt message for my experience with cancer this year. There has been so much out of my control, that I cannot change, that I had to accept as my new reality; so much adversity and loss. I could change the way I felt about it, however. Emotions, as instinctive as they may be, are also choices; we have some power to channel and release them, to change our perspective. That’s why I choose to do something everyday that uplifts and inspires me, that reminds me I am more than just a breast cancer patient, that reminds me how much bigger the world is than myself. Throughout treatment, the more time I spent outside, the better I felt. Whether going to the beach, mountain biking in the Santa Cruz Mountains, or hiking through the forest, every breath outdoors fills me with inspiration and strength, especially through the darkest moments.

We have a choice everyday as to how we spend our day, and how we feel about our circumstances. As I begin my new year of 2021, I choose to bring with me all the good that 2020 brought. People keep emphasizing how bad 2020 was, and yes, there was no shortage of legitimate crises. I certainly experienced a few trying ordeals this year! But as I like to tell my students with distance learning, Find another excuse. I’ve heard it all: My internet’s glitchy; My camera won’t work; My homework didn’t get sent from my outbox. 2020 has brought nothing but excuses; all I care about is what you’re going to do about it.

Pandemic or not, cancer or not, everyday brings the chance to appreciate life, to witness the magic of the world in the simplest of things; adventure beckons us daily. Life is begging to be appreciated, to be recognized, to be revered. It’s up to us to choose to heed its call, to open our eyes to its beauty. That’s one of the main lessons I got out of this year. Look up to the sky, look down at the tidepools at the beach, at the spores of fungi rising from the forest floor. Life persists, and life is eternally awesome; take notice! There is a rhythm to life that beats fiercely, a synergy of flow and grace. That’s what I’m choosing to stay focused on – in 2020, 2021, whatever year I’m lucky enough to be alive in.

Happy New Year!

Post-Cancer Treatment Blues

My life feels a little bit like a post-apocalyptic movie these days. A torched Earth smolders as survivors scan the horizon for signs of life, all but unrecognizable under a silvery ash. While grateful to be alive, they can’t help but feel a bit shell shocked. Stunned, people emerge from the shadows, wondering out loud:

What happened?!

It’s been over two months since I finished radiation treatment for breast cancer, and I feel like I am living in such a land, wandering around my new reality of life post-cancer treatment. I feel like I’m walking in the burnscar of the CZU Lightning Complex wildfire that happened in the Santa Cruz Mountains in August 2020. The landscape is familiar, but the devastation is pervasive, even with signs of regrowth. The analogy to cancer is stark.

I am exceptionally grateful to be alive at all, but the uncertainty of recurrence, coupled with a gnawing anger about why I didn’t catch it sooner, haunts me on a daily basis. I’d read about Post-Traumatic Stress Disorder among cancer patients, particularly after treatment ends; it helped to know that some irritability, worry, and depression were to be expected. As I wrote about in my last post, I’ve been feeling a bit like Jekyll and Hyde, vacillating between feeling extraordinarily grateful for life, and feeling totally down about cancer.

Adapting to my new life post-treatment presents a slew of challenges I couldn’t quite appreciate until I was actually done with the bulk of treatment, chemotherapy and radiation. I am still in treatment, technically; about eight weeks ago, I started taking Tamoxifen, a daily anti-estrogen pill, in hopes of reducing my risk of recurrence. I may be on it for the next ten years. My current sadness and worry could be compounded by Tamoxifen, which is linked to depression and changes in mood, and I don’t doubt its influence.

As I’m learning, there are really no guarantees of reducing your risk of recurrence, despite all the measures you take. Accepting this reality has been the hardest thing to adapt to in my new life. When I finished radiotherapy on September 23, 2020, I felt a huge sense of relief and accomplishment. It was soon overshadowed, however, with a nagging, dubious worry: did treatment work? Were there still any cancer cells in my body, and if so, how many, and where? To what degree – if any – could I influence whether these cells would go on to proliferate? How much was within my control, and how much was just random chance? And what was I supposed to do with all this newfound fear I was feeling? I’ve been wrestling with these questions daily.

It is totally unsettling to know that there’s no promising anything worked, and that it could still come back. Only time will tell. Coming to terms with the mystery of what caused my cancer in the first place, and the ambivalence about my treatment’s efficacy, is tough. There’s a lot of grey area that I have to learn to live with, and as I’m starting to see, being mad about it doesn’t really help in the long run. I haven’t yet reconciled my anger, clearly.

I’m a pretty tenacious, strong person; a realist-optimist. I will sit on a ridgetop in sixty mile per hour winds in a blizzard, and relish in the potential that awaits in the descent on my snowboard. I’ll pedal up a punishing mountain pitch, day after day, because I know how fun it is to ride down it. I enjoy making myself uncomfortable – pushing out of my down-filled comfort zone, stretching my seams. I am a self-proclaimed master of delayed gratification, understanding the give and take of earning your turns. I love a good challenge, and I’m not afraid to work hard for a reward. I’ve been skydiving, rock climbing hundreds of feet off the ground, and I fly through the forest on my bike like a bat – agile, responsive, completely aware of its surroundings, guided by echolocation through the trees. I am human, of course, and I do crash into things from time to time; I’ve had some pretty scary – and painful – falls.

But breast cancer? This has been a bit much. This is by far the scariest thing I’ve ever dealt with, hands down. I don’t feel like such a badass in the face of cancer. I am learning to navigate this new world of uncertainty, and it calls for more humility than I’ve ever known.

I take pride in being an athlete, and an intellectual. It has been relentlessly difficult to accept that my strength and fitness didn’t prevent me from getting sick. Equally, it’s hard for me to accept that I’m having slight symptoms of chemo brain; over the last couple of months, I’ve noticed moments of it, as much as I hate to admit it. Sometimes, when I’m watching Jeopardy!, the answers don’t come quite as quickly, or at all; I can see the first letter of the answer in my mind, but the rest doesn’t come. Then again, I’m able to recall many answers with rapidity. There’s other signs, though. When I’m writing, occasionally I have trouble thinking of a word; it may take longer to identify it. There are moments when I can’t remember a fact or detail about a topic right away that I would typically know. Occasionally, I find myself repeating things, thematic as this time in my life may be.

It’s not constant, but I know myself well enough to notice a difference sometimes. I feel my brain working a little bit harder than usual. I do crossword puzzles and word jumbles everyday; I read; I practice my Spanish. I’ll do all I can to fight it, even if it is a normal side effect of treatment. A lot of it could be compounded by fatigue, but I hope it resolves soon.

The shame that goes with cancer is like nothing I’ve ever experienced. No holds barred, just writing about chemo brain makes me feel a little inadequate. Sometimes I feel like damaged goods, like I’m eternally flawed. There’s a feeling of failure so complete that it can blind you of your prevailing assets; like there’s something wrong with me – something terribly, irretrievably wrong. It’s torturous. I’ve gone over every detail of my life with a fine-toothed comb, analyzing everything from my past to the soup of pollutants I’ve been exposed to since my birth in 1980. The mystery of cancer is maddening. It is incessantly frustrating to have no clear answer for why I got it, or what I’m doing now that may invite it back. It makes me feel powerless.

In a way, I feel like I’ve been marked for death. Dramatic as that may sound, when you have a roughly fifty percent fifteen-year recurrence rate according to some studies, you might feel the same. Based on my young age at diagnosis (39), large primary tumor size at resection (44 mm), metastasis to 3 lymph nodes, and Nottingham grade of 9, I don’t have the best long-term prognosis. Of the dozens of articles I’ve read on NCBI, my favorite website of late, most of them outline elevated risks of recurrence for someone in my shoes. I was Stage IIB, with ER/PR+, HER2-, BRCA-, invasive ductal carcinoma. My odds aren’t as good compared to someone who was diagnosed at Stage 1 with a small tumor confined to one breast. I didn’t catch it early, and I’ll forever regret it. Granted, my odds maybe aren’t quite as bad as someone diagnosed Stage IV. Likewise, someone who caught it early may have a recurrence, while someone who caught it late may live to die old. There are shades of grey in the world of breast cancer, and none of us know if our cancer will come back until it does or doesn’t. The research is growing, and studies can provide estimates and averages, but cancer remains enigmatic.

I’ve been reading lots of breast cancer blogs and forums about life post-treatment, trying to hear some echoes in the cybersphere. I can hear them loud and clear; it comforts me when I read about someone else feeling how I do, worrying about recurrence, or having post-treatment fatigue. PTSD is mentioned often, and I feel like I may be experiencing some level of it lately.

I’ve been feeling extremely irritable, getting riled up at things that I may usually let slide. Someone’s nose sticking out of their half-on mask? I almost see red.

Cover your beak! I fume inside.

Someone stares at me stone-faced and doesn’t say Hi back on the trail?

Why does everyone always have to act too cool?! I lament internally. I really do wish people would say hello more often out on the trails, even during, or rather, especially during, a pandemic. Enough with the stoic aloofness already.

Admittedly, I am regularly annoyed. I’m not handling any sort of stress very well; I get an immediate pit in my stomach. I’m sensitive, and find myself more defensive than usual. I’m like an injured dog who just wants to be left alone to heal. I’ve got a real case of the cancer blues.

I felt some of it earlier during treatment, but now it’s worse than it’s ever been. Every time I don’t feel well, I wonder if it’s back. A headache, stomach ache, or even neck tension can put me on alert. My body, usually a source of pride and joy, feels tarnished by an insidious, lurking agent of death. I feel like a timebomb has been implanted within me, and I have no idea how much time is on it; it could be months, or years.

The uncertainty I live with now is all encompassing. It feels like I’m constantly waiting for the bottom to drop out. I used to be excited about the future, like the blank slate before me was inviting instead of menacing. Now, I feel worried about the future, untrusting. It’s like getting bitten by a dog; you’re always on guard for it to snap at you again.

Exacerbating matters is the loss of my beautiful, long hair. Though the Paxman cold cap saved my hair for the most part, it got really thin at the end and is pretty awful looking at the moment. I’ve cut it to about chin length, with my new growth spiking up a few inches long, coming in thick all over my head to my excitement. Overall, I lost probably over 75% of my hair. When I pull it back into a ponytail, it looks somewhat decent, but I don’t feel like my old self; I see yet another thing cancer has taken from me. Ultimately, I’m glad I did the cold cap treatment, as it was a blessing to keep my hair during treatment.

When I could see my tumor, right before my mastectomy, I was so terrified by how it had started to protrude out of the skin, as if staring me in the face. I am taunted everyday by the fact that I didn’t catch it earlier, that it hid so well under a well-known and large, examined fibroadenoma. I can’t help but wonder where else in my body it may have taken up residence. Like a zombie fire, lurking beneath the forest floor after a wildfire, cancer can smolder insidiously before roaring back to life, swallowing everything whole. Recurrence often means death within a few years.

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