The thing about cancer is that the news hits you hard at once.
And it’s not like you get time to get used to it, because the diagnosis is LOADED. All those scary things that you’ve ever associated with the “big C” rush at you and there’s no real way to protect yourself.
It would be terrifying for anyone, but those of us currently in mid-life grew up at a time when cancer treatment was not as refined or targeted as it is now: visions abound of hospital beds, bald heads, bodies wasting away, vomiting, hopelessness. Most cancers were frequently fatal and diagnosis was the beginning of the end.
As we’re trying to process what this all means for us, for our future and for our families, others try to prop us up with cheers of, “Be a badass!” “Stay strong!” “You’ll beat this!” “You’re a fighter!”
So between juggling the cancer news and the “hang tough” messages from those around us, everything gets overwhelming. Our oncologist lays out a treatment plan and suddenly we need to learn a different language. Tumor types, chemo drugs, clinical terms, side effects.
I distinctly remember wanting to hide under my bed and wait for it to go away. There was so much I needed to do and I didn’t know how to get through it all. It seemed like an immense amount of work for one person.
And then it hit me. All I needed to do was show up.
I didn’t need to be the warrior that everyone was pushing me to be. The mere fact that I was going to my appointments on my scheduled day was enough. I wasn’t going to win a prize for being the best “infusee” or for absorbing the most radiation the fastest.
I didn’t have to fight. All I needed to do was endure and allow. To accept what was going on and move through it. And to breathe.
I brought my office work with me to my first infusion. I was going to be there for at least 5 hours so I figured I should use the time “wisely”. I fired up my laptop but soon the Benadryl that I was given to prevent adverse reactions kicked in and brought on drowsiness.
Suffice it to say I might have answered an email here or there, but did little else. The same thing happened during the next infusion, and the one after that. Eventually I realized that the wisest way I could spend my time was by giving myself permission to rest and ride out the treatments.
When infusion day rolled around, I learned to put aside my work duties and family responsibilities, and simply be. It was such an uncomplicated concept, the benefits of which rippled out beyond my treatment. Why did it take cancer to teach me that?
After reading about the tragic passing of actor Chadwick Boseman at age 43 from colon cancer, in addition to his nothing-short-of-heroic efforts to persevere with his career and charitable acts while facing cancer treatment and a worsening prognosis, I was moved with emotion. First, for the loss of an immensely talented actor who would have had a long and bright future. Second, because knowing how society looks at cancer sufferers, he would not have gotten the roles he did had he been open about his diagnosis.
And, third, for the rest of us run-of-the-mill cancer patients. When I was going through treatment, I wasn’t a hero. I was scared. I didn’t keep my illness a secret so that I wouldn’t be viewed as “uncastable” like Mr. Boseman might have been, or so I would be unhindered in my drive to achieve great things, as other notable cancer patients have. At least the ones who are written about in the media.
Me? I was barely holding on.
Everyone knew about my diagnosis, especially those who saw me on a daily basis. I didn’t want people to speculate about my condition once I started losing my hair and missing work, so I made sure to get the word out. But the real battle I fought was much more personal and invisible. My nemesis was anxiety, and I entered that fight ill-equipped to win it.
So while I was dragging myself around to doctors’ appointments and cancer treatments, I was churning inside. There were days I wanted to numb out and curl up in a corner. But I went to the office. I smiled at coworkers even when I was nauseated by anxiety. That’s it. No great feats, nothing that others could remark favorably on or report in the news. I didn’t feel strong or brave and certainly not like a hero. I simply existed.
It would have been so cool was to have bravely fought cancer while still racking up amazing accomplishments. To be the one about whom people would say, “And she did ALL THAT while undergoing treatment!” No, not me. Not everyone is in a position to be that superhero.
So the point I want to make is that you will hear of the cancer patients who are truly inspirational, and I, along with everyone else, am awed by their strength of character and ability to continue in the face of a life-threatening illness. But there are also many of us that limp along day by day, trying to keep our lives together after they’ve been torn asunder by a cancer diagnosis. We’re not going to get accolades for making it back to work after five days of nausea. But we persevere in our own inconspicuous ways. Perhaps you’re one of those.
WARNING: IF YOU ARE STARTING ON AN AROMATASE INHIBITOR, I highly recommend that you not read this and instead give yourself the chance to gauge the medication’s effects without being influenced by someone else’s experiences. Note that I started letrozole just out of menopause, so my side effects from this drug have been more dramatic than they might be for a women who’s been postmenopausal for longer.
When it was time to start letrozole, I took a different tack than when I began tamoxifen. For the latter drug, I did all the research I could, researching relevant studies, digging into possible side effects and visiting lots of forums to learn about what other women were experiencing.
I wish I hadn’t. I think all the negatives affected my perception and made me anxious about taking the medication.
So after two years of tamoxifen, when my hormone levels suggested that I was postmenopausal and it was time to switch to an aromatase inhibitor, I stayed away from clinical literature about letrozole. I decided to give it a chance, since my oncologist felt that I had confused the effects of anxiety about taking tamoxifen with the actual effects of tamoxifen.
Okay, then. As I was leaving my oncologist’s office, letrozole prescription in hand, he added that some women complain of “joint pain”. I think he felt it was his duty to warn me.
My experience? I’m finding it harder to recover from workouts. I train with free weights and am a rower (currently, indoor) and the change in my resilience and stamina is striking. In 2018, a year after finishing up chemo, I was able to power through tough workouts and felt like I’d gotten most of my pre-cancer strength back.
Fast-forward to now, just two years later, I feel old. My joints are creakier and I’m having increased muscle pain and overall stiffness. I’m experiencing bone pain in the leg that I broke skateboarding when I was 12. Yeah, I push through workouts, but they’re taking their toll on me.
I’m fortunate to have a full complement of gym equipment at home, so the COVID-19 lockdown didn’t hinder my workouts. To get some fresh air, I incorporated more hiking into my routine, in addition to my regular workouts.
It was too much and left me with hip pain that made it difficult to fall asleep. So I took a rare break from vigorous workouts and for two weeks incorporated more gentle movements and focused on yoga, which I had been doing intermittently.
When I started ramping back up, I didn’t feel rested, I felt weak! Weights that had been easy to lift a couple of weeks before felt challenging. I had to restart the process of building my strength. You could pass it off as simply “age”, but I’m only 54, and the drop in strength and energy has felt precipitous, even demoralizing. While it’s true that I went through menopause during the last two years, it was a medication-induced menopause and I was literally shoved through the change.
Letrozole has been shown to be very effective in preventing cancer recurrence, presumably because it works to keep estrogen levels low. However, most women on letrozole are in their 60s and have been postmenopausal for a number of years. For a woman in her 50s, the aging effect of estrogen suppression has felt dramatic.
My libido dipped even lower than I’d experienced with tamoxifen, something I was warned about by my GP and gynocologist (both females). My male oncologist didn’t talk about it. I believe this is a seriously underreported side effect of aromatase inhibitors and one that many women suffer from in silence, because they don’t feel comfortable bringing it up.
Likewise, I feel my appearance changed. Now, this may simply be my perception of myself, as my post-chemo hair transitioned from super-cool and spikey to thin and limp (and, now, untrimmed!), and my eyebrows never recovered. But it’s not just in my head: A bus driver recently tried to offer me a senior citizen discount, whereas four years ago someone had told me they thought I was in my late 30s! That’s a big difference. The fact that the lack of estrogen is making me look like I’m older than I really am has become distressing:
And that difference is felt in my relationship with my family. There have been times that I’ve looked at my husband (four years my junior) and my high school-aged kids, and I feel like don’t belong with them. I feel like a stranger, an old lady that’s just hanging around. That hurts a lot.
And on my worst days, I feel dark clouds rolling in, bringing with them frustration and hopelessness. Is it letrozole or menopause? Does it even matter? Take a woman, throw her in a bag, tie it to a tree branch and then beat it with a stick. That is how I feel when I have to take a pill that does these things to me. No control, no future, lots of pain. The longer that I continue with medications like this, the more I feel that they are pointless, since I’m starting to not care whether or not the cancer comes back. And that’s the worst side effect of all.
So, this blog is about being honest about the cancer experience. But it’s also about mindfulness. I have to open the door and let the negative feelings into the room so that I can offer them compassion and a kind ear. I sit with them for a while, and eventually, I feel better.
This post is not about politics. It’s about compassion.
Wear the mask.
I have an 18-year-old daughter who works at a local bakery-cafe. While most of her hours were cut, she’s started to get calls to come in again. She’s there to take your order for chicken soup and salad and fresh-baked baguette. She also wears a mask and gloves, for your safety. As her mom, I’d appreciate it if you wore a mask for hers.
She’s not to blame for what’s going on. She didn’t create the virus nor does she have any control over how long the country will be closed down. She’s also not getting hazard pay, nor does she get an allowance. She earns all the money she has. Her job was to pay for fencing lessons, which she has had to stop, but now she’s saving up for college expenses.
My daughter is there to serve you. If you come in without a mask because you feel it’s your right not to wear one, she’s not going to toss you out the door. She’ll give you your food. You risk giving her a virus.
And by extension, giving the virus to the rest of us in her family.
Just wear the mask.
For a few minutes, when you’re in the cafe, wear the mask. It’s not a political statement. It’s a statement of caring and compassion and understanding that we are all inextricably linked to each other. What is good for one of us is good for all.
And I mean, for all of us down here on the ground level. We’re not the movers and shakers, we’re simply the doers and the survivors. We’re not the millionaires who quarantine in luxurious surroundings and get to break the rules with indemnity. We’re your neighbors who share your concerns.
You’re angry? You have the right to be. But you have no right to take it out on my child.
So please, wear the mask. Compassion looks good on you.
If there’s one thing that the COVID-19 pandemic has illustrated, it’s that all of us on this planet are inextricably interconnected.
In times of disease spread, this may seem like a bad thing, but it’s also an opportunity to pause and reflect that no matter where we live, we all belong to the same species. We are all vulnerable to the coronavirus, no matter whether someone is a high-profile lawmaker, a movie star, a famous athlete or the custodian at an elementary school.
So this is similarly a good time to think about the importance of sharing resources and considering the common good. I’m looking at you, Ms. “I’m-cramming-three-packs-of-toilet-paper-into-my-cart-even-though-the-limit-is-one.” C’mon, don’t be like that. Leave the stampeding to cattle herds. And the rebellious college students who feel the right to crowd beaches for Spring Break celebrations? Time to grow up.
We should be above that. And I believe we are.
As many hiccups as there have been, communities are adjusting to the changing situations at a breakneck pace. My university has ordered all “non-essential” personnel to work from home, within a week, we scrambled to move meetings online and eke out a research plan. Likewise, university courses are transitioning to an online platform, as is my kids’ high school. Restaurants have switched to take-out wherever possible. And my daughter joined her fellow fencers for a ZOOM training session with their coach last night.
This is not to say that this has been effortless. My daughter will probably lose her restaurant job, which means that she won’t have the income to continue fencing, as the classes are a financial burden on our family. But she has a place to live, food to eat and incoming college acceptance letters. Others are losing their livelihood and looking at a far bleaker future. Many of our favorite small businesses are suffering. Therefore, as much gratitude as I have for the ability to work from home and not face immediate financial consequences, I have great compassion for those who are struggling through what could be a long and difficult situation.
And this isn’t even counting the number of infected individuals, some with severe complications. These days, “hot spots” are less about internet connections and more about loss of life. Few saw this coming and we won’t see the end of it for some time to come. My heart goes out to COVID-19 patients, their loved ones and the uncertainties they all face.
At the same time, I’m concerned about a group with which I’m more familiar: newly-diagnosed cancer patients. Getting a cancer diagnosis is frightening enough; getting that diagnosis when the treatment for the disease puts you at significantly higher risk for succumbing to a global pandemic is unimaginably unfair.
This is painful, so I look for the bright spots in the world: the clothing designers distributing patterns for people to make their own masks so they don’t compete with hospitals for supplies, and the designers making gowns, scrubs and face mask covers for doctors; the local seamstresses who are firing up their sewing machines and using their skills in the same way; the alcohol distilleries and perfume producers who are switching to making hand sanitizer; the millions of dollars raised to support intensive care units. All this gives me hope that we are bigger than the virus and we’ll pull ourselves out of this.
Given that there’s a lot of divisiveness and polarization in the United States right now, I’m looking for the humanity in my country. Most of the time I feel rather ineffectual, and I have wanted to make small difference in the life of a stranger.
My opportunity came in the form of a news story (mine, Time online, but this has been posted by a wide variety of sources): Maj. Bill White is a 104-year-old veteran of the Battle of Iwo Jima who spends much of his time scrapbooking. He mentioned to the interviewer that he’d enjoy getting Valentine’s Day cards, which he promises to keep on his bookshelves, the same ones where his Purple Heart sits.
Now, while I’m decidedly not a fan of war and wish that we lived in a world where the military was not necessary, I have respect for people who are willing to give of themselves, no matter what the venue. But what moved me the most was the spark that this elderly man had. When he sang the Marines’ Hymn (see video), his voice was clear and unwavering. He still had so much life in him at age 104.
And his secret for living so long? “Just keep breathing.”
I will be sending him a Valentine’s Day card. If you would like to do the same, here’s the address:
Operation Valentine ATTN: Hold for Maj Bill White, USMC (Ret) The Oaks at Inglewood 6725 Inglewood Ave. Stockton, CA 95207
And if not to Maj. White, perhaps there’s another deserving individual whom you could surprise this Valentine’s Day with a cheery greeting? I encourage you to do so. There’s still enough time.
My kids and I got hit with the flu right New Year’s Day, which meant mandatory rest and time to browse the Internet. After randomly clicking through websites, I landed on a story about the stray dogs of Chernobyl.
This touched me deeply because I hadn’t realized that animals were abandoned during the nuclear disaster in Chernobyl, Ukraine in 1986. When people evacuated the area, they were told to leave their pets, that they’d be able to soon return. Obviously, that didn’t happen, so animals that had been used to being fed, watered and otherwise cared for were suddenly left alone. To make matters worse, the Soviet government sent soldiers into the disaster area to kill the homeless animals in an effort to contain the radioactive contamination.
Amazingly, some dogs and other pets survived in the exclusion area, even through harsh winters, lack of food, threat of predation and possibility of rabies. Given that it’s been over 30 years since the accident, the current “dogs of Chernobyl” are several generations away from the original dogs, but their circumstances are still dire.
As I’ve gotten older, gone through cancer treatment and now menopause, I find that stories like cause me to disintegrate into a mushy mess. It breaks my heart that these animals were serving as companions to humans, and then were left to suffer from a human-made disaster when it was deemed too dangerous for the humans to stay there. These cruel twists of fate seem too much.
However, this post is not about agony or anger against humans, it’s about hope and compassion. A charitable group called Clean Futures Fund was established, as their mission statements reads, “to raise awareness and provide international support for communities affected by industrial accidents and long-term remedial activities”. Among other projects, they sponsor the ogs of Chernobyl effort: veterinarians and other experienced personnel who care for the descendants of abandoned pets by spaying, neutering, vaccinating, providing first aid and whatever else needs to be done to keep the animals as healthy as possible.
And the best news is, after years of people being told that all the animals were radioactive and therefore unadoptable, that presumption has been shown to be a myth. How? Because the radiation found on the animals can be washed off – it comes from the environment, not from the animals themselves. Finally, puppies are being removed from the exclusion area and sent to loving homes.
There are many more animals still left, but there are also many dedicated and courageous volunteers who are determined to make sure that these furries are not forgotten. While this story isn’t over yet, it promises a happy ending.
There’s more to the story I began in Part 1 and what better time than the start of a new decade to relate it?
I have a monkey. Those of you aware of your monkey minds know exactly what I mean.
But at this moment, “I have a monkey” means something more tangible. After giving it some thought, after going through struggle after exhausting struggle over all the negative chatter in my head, it was clear that I needed to change my strategy.
A quick Amazon search provided the result I needed: a gloriously soft, appropriately small, unbelievably cute plush monkey that would serve as my previously-maligned nemesis. It is a physical representation of my MonkeyMind (my little MoMi), but not one that I’d want to stay away from. This one begs for soft cuddles.
(To be clear, I bought a stuffed toy from the Amazon site, not an actual primate from the Amazon!)
How can something so darling be a nemesis? It shouldn’t be.
This is not about avoiding thoughts or wrestling my mind into submission, which I’d been trying to do. This is about acceptance of something that is a part of me.
Instead of tossing and turning at night, instead of succumbing to anxiety, instead of frantically trying not-to-think about what’s bothering me, I take that comfy manifestation of my worries and shower it with affection. I hold it gently, and then I hold my thoughts gently too.
The best part of this is that MoMi, a representation of that which upsets me, is actually so easy to hold and love.
What does my MonkeyMind need? The same thing this world needs a lot more of: LOVE.
I wrote my last post about my not-so-mindful behavior in the jury lounge of the local Superior Court, waiting to see if I’d be called to serve as a juror on a case.
I wasn’t, but the situation ended up being stressful nonetheless, and it had nothing to do with my forgetting that I had a metal fork in my backpack and being called out by security for it. (Oops!)
No, what did it was the runaway narrative being played out in my head about potential frustration if I were selected, and whether I could manage all the facts of the case (chemo brain) and the sitting (neuropathy and back pain). While not completely inconsequential, neither chemo brain nor physical limitations were an issue for me as I was sitting in the jury lounge, waiting.
That evening, released from jury duty for another year, I came across an article by beading teacher and author Kristal Wick, who settled on beading as meditation to help her deal with her monkey mind, and in it she wrote about her realization that we are making stress up.
I would clarify that by noting that we don’t make up stressful events themselves, but the toll that anticipating what may happen takes on us depends in great part on our reaction to it. And whether or not we want to admit it, ultimately that’s under our control — although if we’ve established a behavior pattern of anxious reactivity (*cough, cough*), it will take practice to rein in those responses.
But the reminder that those “thousand deaths” that I was dying in advance of something that was not real or guaranteed…ahhhh, I needed that.
Next time a calmer, more realistic response, perhaps?
In his post, Smilecalm describes how mindfulness creates a situation where justice truly prevails. Whereas it would have been easy to make a snap judgment and convict someone who seemed, on the surface, to be guilty, pausing and carefully sorting through the facts provided a different picture.
When I think of the concept of “beginner’s mind”, I think of this kind of patience and open examination of what is before you, instead of moving down well-worn paths to conclusions based on circumstances.
I am sure that the defendant in Smilecalm’s case was grateful for the care with which the jurors considered his testimony. I, for one, am grateful to Smilecalm for bringing to light not only the importance of serving on a jury, but doing so with care and compassion.
According to a recent Time article, Zen Master Thich Nhat Hanh, who is considered the father of mindfulness, is close to death, never having fully recovered from the stroke he suffered in 2014.
Although that report has been disputed by Plum Village (the school of Buddhism coming out of the Plum Village Monastery, which Thich Nhat Hanh founded in France), at 92, the monk is certainly frail. He has returned to the temple where he was ordained decades ago, Tu Hieu Pagoda in Hue, Vietnam, to live out the remainder of his time on Earth.
Due to his condition, Thay (“teacher”, as he is affectionately called) is unable to speak, but he still manages to serve as an example of living in the “now” and appreciating every day. Thay is considered one of the greatest teachers of Buddhism and his influence has reaches countless millions.
Mindfulness has played a significant role in my life and emotional well-being since my breast cancer diagnosis in early 2017; however, my first exposure to Thich Nhat Hanh was in the early 2000s, during a program called Speaking Of Faith, hosted by Krista Tippett on NPR. I was transfixed as I listened to the story of his life, his anti-war activism during the Vietnam War and his interpretation of Buddhism. We purchased several of his books, specifically the ones he wrote for children: Each Breath A Smile and Under The Rose Apple Tree.
It wasn’t until my cancer experience that Thich Nhat Hanh’s teachings resurfaced in my life. I am deeply indebted to mindfulness for taking me through cancer treatment into recovery and survivorship. And yet, even now, I understand mindfulness in only the most superficial way. Every day of my meditation practice brings me more deeply into it. It has been invaluable not only in dealing with anxiety, but also in cultivating compassion for myself, something that has not come easily.
Most recently, I’ve been utilizing mindfulness to help deal with chemo brain, which continues to plague me. When I feel stupid, can’t remember things or lose concentration, mindfulness provides the way to be more patient and understanding with myself. By staying present, I’m better able to focus. Am I good at it? No, not at all. But I do my best. It’s a process. And if I weren’t practicing mindfulness, I would be in a much worse place.
While I am Roman Catholic, I’ve found that Thich Nhat Hanh’s Buddhism resonates with me, particularly as I watch Christianity struggle with hypocrisy. The practice of mindfulness was the most important gift that I received with my cancer diagnosis, and it allowed me to find even a sliver of peace in what was a dismal situation. I am coming to accept where I am now, not holding on too tightly, but appreciating what I have.