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.
Since my breast cancer diagnosis, I’ve kept a close eye on both the popular and scientific literature regarding potential causes of breast cancer. There’s a lot of new information coming out now, but the core recommendations for lowering one’s risk of breast cancer remain the same.
In fact, current research is reinforcing them: keep a lower weight, eat more fruits and veggies, exercise, don’t smoke, don’t drink. While I’m oversimplifying, that’s the gist of the message that’s being disseminated. Some articles go a step further and make bold statements. One in particular stressed that cancer was preventable through lifestyle changes. Anand et al., 2008 claims: “cancer prevention requires smoking cessation, increased ingestion of fruits and vegetables, moderate use of alcohol, caloric restriction, exercise, avoidance of direct exposure to sunlight, minimal meat consumption, use of whole grains, use of vaccinations, and regular check-ups. …[W]e provide evidence that cancer is a preventable disease that requires major lifestyle changes.”
Of course, when I read these recommendations, all I absorb is, “You irresponsible ass, you’re not doing enough to protect yourself!” The fact is, I was doing all that and more, and I still got breast cancer. If you’ve read some of my other posts, you’re probably sick of hearing me say it. I shouldn’t have gotten breast cancer according to all the guidelines out there.
So here’s the issue that I have with all these helpful suggestions. They keep repeating lifestyle changes that should be implemented to lower your cancer risk. Let’s face it, it doesn’t matter WHAT disease you’re trying to avoid, you should maintain a healthy weight, exercise regularly, not smoke and so forth.
The stigma of cancer comes in when we start making assumptions about WHY someone gets the disease. Given all the purported connections with lifestyle for breast cancer, that assumption may be that the woman (or man) brought it upon themselves. The more that we stress lifestyle changes, the stronger the connection becomes in the mind of society: if you get cancer, you were clearly doing something wrong and it’s all your own fault.
I will be the first to stress the importance of doing everything you can to improve your health. But we have to accept that given our current lack of understanding regarding the exact agents that bring on cancers, we cannot put the “blame” squarely on the shoulders of the patient.
While smoking does account for 80% of lung cancer deaths, that’s only a general statistic. Statistics work well for populations, but they can be strikingly inaccurate when it comes to pinpointing causes for an individual. For example, one of the youngest known cases of lung cancer was in an 8-year-old girl in Jiangsu Province in China due to some of the worst air pollution on the planet, not to a pack-a-day habit. So we need to be careful about the assumptions that we make.
Back to breast cancer, if you were to construct a picture of what a “typical” breast cancer patient would look like based on the recommendations for what to avoid, you’d come up with an overweight, sedentary, smoker/drinker with a bad diet. But if you start picking this apart, you find that these predictions don’t hold up. For example, the connection between breast cancer and weight is complicated. In fact, many of the women I know with breast cancer had healthy habits, and most did not look like the picture that we constructed at the top of this paragraph. In contrast, there are numerous women with unhealthy habits who remain cancer-free.
This message that we send about how to lower your risk of cancer raises the possibility of stigmatizing the patient. It suggests that we have control over our outcome, and this is simply not the case. Currently, we don’t know enough about what causes cancer and what to do to truly avoid it. And if we do what we can to lower our risk of it, that only means statistically lower our risk. That doesn’t guarantee that we won’t get the disease.
My painful personal lesson was to not assume that I could avoid cancer by following health guidelines to a “T”. At the same time, I had to shake the notion that I had done something wrong to willfully bring cancer upon myself. Ultimately, I had to let go of both control and responsibility because neither one had a role in this disease for me.
The best we can do is live as healthfully as possible, accept the uncertainty that comes with a situation this complex, and not judge those who have been unfortunate enough to fall prey to the disease.
Part 1 of this series chronicled the loss of my hair to chemo and subsequent gradual regrowth through the end of 2017. Part 2 is the “beyond” part of “chemo and beyond”. These photos are somewhat self-indulgent because, well, hair does grow and so whether I’ve got short bangs or spikey hair doesn’t really have anything to do with chemo. Nonetheless, I wanted to provide some perspective regarding how long it takes until a cancer survivor’s head doesn’t look like a cancer survivor’s head.
I need to stress that these photos were originally taken so that I could monitor my progress, not with the intention of posting them for all to see, so the quality may be lacking.
And so ends this journey. What my hair looks like now is vastly different from when I began with my cancer diagnosis, but as I’ve said previously, I am not the person inside that I was before, and now my outside reflects that. After a year of treatment followed by a year of regaining my footing, I’m edgier and willing to push my boundaries. Cancer didn’t give me a choice but to move forward, and that’s what I’m doing.
Since there are quite a few blog posts on this site, I’ve published an index to make navigation simpler. The index not only links to individual posts, but also provides a short description of what they’re about for anyone who wants to explore what I’ve written but can’t make heads or tails out of my post titles.
I’ve also cleaned up the menu a bit to make it easier to access the “I Didn’t Expect THAT” and “Invisible Effects” post series, in addition to the aforementioned index.
Future housekeeping is forthcoming. Thanks for reading!
It’s been almost a year and a half since my last chemo infusion. This past week, I treated myself to a chic haircut at a real salon (instead of going to a cheaper chain hair-cuttery) and I’m so delighted with the result. I reflected on what it took to get here, hair-wise, by going through the photos I took of this whole experience. This post series chronicles my cancer journey as witnessed by my scalp.
Please note that these photos were taken for my own records, without the expectation that I’d be posting them online, so I apologize for the quality.
I am getting my hair cut today, but this is no ordinary trim. After losing all my hair to chemotherapy in 2017, I find myself in a completely foreign realm: short hair after a lifetime of long locks.
Losing my hair was like losing part of my identity. We’re used to bald men — it’s even hip to shave your head as a man. But bald women are seen as oddities, because our hair is tied to our perception of beauty. A woman with no hair is perceived as an oddity — something is wrong. You’re sick.
So hair regrowth took on a particularly important meaning for me after chemo. It wasn’t simply that I finished treatment — I was reclaiming myself. My first haircut, in February 2018, when my ends were getting unruly, was terrifying. I hated the thought of cutting what I’d “worked” so hard to regrow. When you’re a cancer patient and hear horror stories about permanent baldness, getting hair back is not taken for granted. I didn’t finally exhale until I saw little sprouts at the front, and that didn’t happen until about November 2017, three months after my last chemo. I had no idea that it would take so long for my entire scalp to wake back up.
Now, almost a year and a half after chemo, I still look so different from the pre-cancer me, and I get a shocking jolt every time I see my reflection. It’s me, but it’s not me — I guess it’s the “new” me. I’m different and there’s no going back to who I was before. Sometimes that leaves me feeling lost and disoriented.
My husband feels similarly. Cancer affects those we love too, and as I struggle to define myself, he works to understand how I’ve changed. As I’m not familiar to myself, I am also unfamiliar to him. While it’s true we all change as we age and are not the same people we were when we met, normally those changes are slower and we have some control over them. But cancer is the hurtling locomotive that plows through your life and tosses everything you’ve known to the sides. Cancer forces you to pay attention.
So I’ll march into the salon to delve into new-short-hairstyle territory and put on a brave face to make cancer recovery into a positive experience — one that I didn’t ask for, but here I am anyway.
It won’t come as a shock that I’m so grateful to have cancer treatments behind me. While it’s true that the ‘me’ in the mirror still looks so different from the person I used to be, memories of cancer slowly fade into the background as concerns about current life take precedence. The more time that passes, the more likely I am to think that treatment wasn’t that bad. Hey, maybe parts of it were pretty good?
Nothing shocks me back to the frigid reality of cancer like an unexpected flash of pain in my breast. I don’t mean those post-surgery “zingers” that I was warned about. Those I’ve gotten used to and consider familiar. The ones I’m talking about feel different. I stop breathing for a second, trying to define the sensation.
I feel stupid forgetting how nasty a beast cancer is. These pains throw me into high alert. It’s an unpleasant sensation, because it transports me back to an uncontrollably dark point in my life. I’m so mindful and present in the “now” that it’s almost too intense.
Then the pain stops. Um, okaaaaay?
These are sensations that someone who’s never gone through cancer would consider to be weird annoyances. But to a former patient, they mean something else. I’m primed to worry about anything new, no matter where it is.
Twice so far, I’ve experienced a sudden weakness in my arms. Both times it was in the morning not long after rising. My arms felt heavy and uncomfortable. This is not normal. It’s worst for about a minute and then gradually disappears, but my focus on it is so sharp that I’m not sure if it’s really gone even after a half hour, most of which I’ve spent googling “sudden temporary weakness in both arms” and getting unsatisfying results.
Incidentally, not a single one of those search results mentions cancer.
That echoes what my oncologist said: “You know, it doesn’t have to be cancer.” Yeah, I know, but in my mind the Big “C” still seems like the scariest bully on the block. I shudder at the thought of another round of treatment.
Clearly, things have gotten weird when you read that your symptoms might be due to ischemic stroke — and breathe a sigh of relief.
The funny thing about telling people that you have breast cancer: their eyes always seem to glance down at your chest, as if they’re thinking, “Wait, are those real?”
Our society puts a lot of value on breasts, way more than just as vehicles for nourishing our young. As a dedicated breastfeeder of two children, I was surprised by how many women admitted to me that they wouldn’t breastfeed because they didn’t want their breasts to sag.
There’s also this weird assumption that a woman will jump at the chance to “improve” her breasts; in the case of a breast cancer patient, hey, congratulations, you get “free” implants! YAY! After I related my diagnosis to a male friend, he noted that finally my husband would get the C-cups that he’s always dreamed of.
Stop. Go back and re-read that last sentence. It was my breast cancer, but my husband would “benefit” from it too. Yay.
If you’ve read about my breast cancer experience, you’ll know that a mastectomy was unnecessary because my tumor was small enough to require only a lumpectomy. My recovery from surgery was short — I was back to work the following week.
However, my insurance would have covered removing far more breast along with reconstruction. None of this, as far as I’m concerned, would have been medically justifiable, but there was the expectation that breast cancer equals boob job, even when studies have shown that survival outcomes are not improved by complete removal of the breast when only a lumpectomy is indicated (for example, Fisher et al., 2002), and there are far more complications that can arise from the multiple surgeries necessary for reconstruction.
This, of course, was my personal preference. To be fair, I know a number of breast cancer survivors who had no other option than a radical mastectomy. That in itself is traumatic, so it’s perfectly understandable why they would want reconstruction in an effort to regain whatever normality they could. As I wrote in Body Image, Part 1, like it or not, breasts do define us as women. You can argue whether or not that sets women’s rights back (“I am not my breasts”) but I feel that when it comes to cancer, all bets are off. Breast cancer survivors deserve a lot of leeway in making decisions about whether or not to reconstruct.
I didn’t need a complete mastectomy and thereby did not augment my tiny breasts even though I could have. For me, this was not a matter of “looking better” or “taking advantage” of the situation the way others suggested I should. It was about maintaining the greatest degree of normality, getting though the experience and trying to get on with life.
I was warned about this. I mean, where do you want to start counting the reasons for libido to take a hike? Anxiety of a cancer diagnosis, fear of losing breasts (the societal hallmarks of femininity), chemotherapy (which pretty much kills everything), tamoxifen (blocks estrogen, so there go the hormones)…
Out of all the things touched by breast cancer and its treatment, this is one of the most personal that not only affects the patient but also the one you love, because it throws a monkey wrench into your relationship. As with many of these “invisible effects” of cancer, this one is not discussed enough, but really should be.
A marriage that is strong should survive this. A marriage that is new or rocky may take more damage. Married your wife mainly because she had long blonde hair, lovely breasts and looked good in your Porsche? Uh-oh. Stories circulate about the high percentage of divorces that result from lack of adherence to the “in sickness and in health” part of marriage vows. I’ve read that those statistics are inflated, and yet, it’s hard to ignore confirmed instances of, “he didn’t find me attractive anymore,” or “she no longer wanted to have sex with me.”
In my experience, all the effects of cancer dropped onto your libido won’t necessarily squash it into oblivion. But they do add a degree of difficulty in maintaining intimacy. There is nothing normal about having cancer, and so it’s not surprising that it wrings the “normal” out of a marriage. Communication is critical, and if things are going to break down, I think that’s where it’ll happen.
It’s not that there wasn’t desire throughout my cancer treatment. It’s that it was hard to Tetris sex into the chemo schedule, when I was dead tired and feeling like the lining of my GI tract had sloughed off. Hubby was taking care of the kids and I was lucky if I could make it to the toilet by myself. Perhaps desire was there, but any available energy was better utilized for self-care.
Chemotherapy left me feeling very “neuter”, in that gray area between female and male. Being scrawny and bald didn’t help. I didn’t look feminine and felt even less so. My reality was fuzzy, as if I had one foot in this world and one in the next, which wasn’t the greatest recipe for firing up desire. We went through about a year of unintentional celibacy and that took a lot of discussion to patch up.
Now in survivorship, sexual intimacy has taken a backseat to the rest of life. I mean, I’m still alive, so I’d better make the most of it, and languishing in bed is not where I want to be. I’ve spent enough time supine. Weekdays I need to get the kids ready for school and get myself to work. On weekend mornings, there are workouts to do, posts to write, meditations to finish, coffee to brew. If there are insufficient hormones to drive me into the arms of my beloved, then he’s left to get a few extra hours of sleep while I get on with life. Once in a while, we reconnect, but we’re behind the curve on this.
At the same time, intimacy is an inextricable part of a healthy long-term relationship. I am not giving up on finding my mojo again, but as with everything in cancer recovery, it’s going to take time.
In the midst of trying to avoid dying from cancer, and being fortunate enough to have health insurance, I wasn’t thinking about the cost of treatment. I couldn’t get past the thought of having cancer, the incoming test results and what my treatment options were.
But even with excellent insurance, there were a lot of expenses. Every doctor’s visit dinged us, as did every infusion. Surgeries (biopsy, lumpectomy, port placement) came with co-pays, some in the hundreds. A trip to the emergency room for an infected fingernail (thank you, chemo) was a few hundred.
Did I need this treatment? Yes! Do I regret spending this money? No! I received excellent care from my oncology team in addition to some amazing freebies that were offered by the cancer center, not the least of which was truly exceptional counseling. As someone with degrees in psychology, I feel that therapeutic psychological support during cancer treatment is an absolute necessity, and I was blessed to have an amazing Clinical Counselor. Additionally, the Nurse Navigator assigned to me had also been a breast cancer patient and was able to offer insight and support that I wouldn’t have been able to get from just anyone.
But once I got through the initial shock of my diagnosis, I had to start asking, “Is this covered by my insurance?” While some treatment was non-negotiable (surgery, chemo, radiation) there were things that I didn’t get (lymphedema compression sleeve) because a costs–benefits analysis suggested I could get by without them, and other things (genetic testing, 3-D mammogram) that I sprang for because they were well worth the peace of mind.
What saved us as a family was that there was an out-of-pocket maximum that limited how much financial damage we incurred. I consider myself unbelievably lucky because of that, particularly with two kids only a handful of years away from applying to college. Our savings did take a hit as the expenses piled up, but it was much, much smaller than it could have been.
I dodged that pricey bullet, but there are so many others who do not. The financial impact of cancer is not discussed enough. When I started researching the actual cost of all my treatment — not the fairytale insured version that I was so fortunate to pay — I was absolutely dumbfounded. The price tag topped $100k for my chemo alone! Going through treatment without insurance would have devastated us. Survivors go bankrupt over this.
Medical bills aside, there are costs to be incurred simply from lost work due to treatment and survivors may find themselves unable to work once treatment is over. Chemo brain has caused a great deal of stress for me as I face transitioning from part-time to full-time employment (a necessity due to the ridiculously high cost of living here). I am slowly learning to adjust to my lapses in concentration so that chemo brain does not pose a liability to the quality of my work. Mindfulness and meditation play a huge role in addressing these issues, as does moving towards a career that makes more use of my strengths and experiences, rather than simply looking for advancement in my current position.
I didn’t anticipate any of this when I found out I had cancer. I was so anxious about the diagnosis that the quality of my insurance didn’t even register. We thought we were ready to do “whatever it takes”. I mean, can you put a price on a life? And yet, can you plunge your family into debt with a clear conscience? These are painfully difficult questions with no good answers. It is unbelievably fortuitous that my husband had switched us to a more expensive insurance several years earlier, and heartbreaking to know that many others never had that option.