View from the Waiting Room

I am weirdly at ease.

Today is my 3-D mammogram, the one that will either confirm that I’m in breast cancer remission or that I’m going to have another rotten year (or more). Two years ago, around this time, I was completely racked with anxiety in preparation for the diagnostic mammogram and ultrasound that would detect my cancer.

I feel placid. Granted, I do self-exams on an almost-weekly basis (it’s a survivor thing) and was checked out by my oncologist early last month, so I know there’s nothing palpable there, although the 3-D mammogram could pick something smaller up. But I’ve also matured in my ability to let go of thoughts that drag my mind away to wild extremes, and instead accept what is happening in the moment.

I admit that I’m holding off on travel and hair expenses until after my mammogram, because if my cancer comes back, the money spent on them would be better put towards treatment. Neither a cross-country flight nor an edgy new haircut would be in the cards for me.

If I could have one superpower, it would be to remain calm in every situation.

Another reason for waiting on making plans? It’s because the agony associated with desperately clinging to the desire to be cancer-free and then having those hopes dashed is excruciating. So for the moment, hanging around in limbo with less emotion invested in an outcome provides more comfort.

I started meditating in an effort to free myself of expectations. Today I am able to make space within myself to hold the possibility of both remission and recurrence, and then to think about neither.

So I sit in a comfy robe as I wait for the radiologist’s assessment, feeling the warmth of the cup of tea in my hand. I am here now, focused on the present instead of potential outcomes. And this is the most peaceful place to be.

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Shortly after I wrote the above, the radiologist came in to confirm the good news. Another year, another clean bill of health.

Last year when I got the “all-clear” I was still finishing up treatments. And the news felt like a huge release.

This year, I felt much calmer. Not gonna lie — somewhere inside, try as I might to release all expectations, I still expected to be okay. But I was able to not focus on the outcome of the mammogram and instead go with the flow of the day. This is a first for me, so my ability to maintain that level of calm may be more significant than being cancer-free.

Oh, who am I kidding? Being cancer-free kicks ass!

A Final Word On Risk Factors

Okay, maybe this post’s title is a lie, since I keep bringing this topic up. But I admit that I need to stop whining about getting breast cancer when I didn’t have risk factors, so I’m officially giving myself one last time to vent. And then it’s time to let it go.

First, what is a risk factor? The NIH National Cancer Institute dictionary defines a risk factor as “something that increases the chance of developing a disease”. However, that does not mean that it’s necessarily a cause of that disease. And that’s where the potential confusion (and in my case, irritation) arises.

While breast cancer has a number of risk factors, none of them are 100%-for-sure causal in nature. Even having the BRCA gene does not guarantee that you’ll get breast cancer, although your risk is quite high.

So why does this matter? Turn this around and look at someone with breast cancer. Based on risk factors, you’d expect them to be overweight, sedentary, a smoker, a drinker, an unhealthy eater…and you might be completely wrong. Ascribing unhealthy behaviors to an individual just because they are a cancer patient is potentially stigmatizing (it suggests that they are responsible for bringing on their disease) and ignores the fact that we still don’t know why cancer develops. And what of all those making poor health choices who do not get cancer?

Engaging in the opposite behaviors — being a lean, active, non-smoker, non-drinker with a plant-based diet — likewise is not guaranteed to protect you from breast cancer. And yet, that’s exactly the feeling you get from reading all the recommendations, which leads to a potentially dangerous false sense of security.

Risk factor, schmisk factor! Putting in the effort to live as healthfully as possible is well worth it, no matter what.

Certainly, no matter what disease you have, the more healthy behaviors you engage in, the better your outcome. However, even being a paragon of healthy living is not the “get out of cancer jail free” card that we are led to believe it is. So get yourself checked out and don’t take your health for granted!

What brought all of this up? At a recent gathering, I had an interesting conversation with another former cancer patient who also happens to be a medical psychologist. She felt as frustrated as I did about the way cancer risk factors are presented, so I felt a vindication of sorts. We both agreed that it is critical to highlight the difference between cancer risk factors and causes. And of course, no matter what your perceived cancer risk, to live as healthfully as possible.

Now that I’ve gotten that off my chest, I will do my best to shut up and move on.

1975-2019

Unbeknownst to me, the friend whom I wrote about in “Waiting To Say Goodbye” had already passed by the time I posted last Saturday. The end came very rapidly but peacefully Friday at sundown, allowing just enough time to enable her to be surrounded by everyone in her immediate family.

This is sudden and painful. She and I had spent a good chunk of 2017 sharing breast cancer treatment experiences. We knew that there were no guarantees with cancer, but we both had hope. Neither one of us imagined that this would be one of the outcomes.

After she knew her cancer had spread, she continued living as she always had, toughing through the hard parts. She didn’t want people asking her how she was feeling, she wanted to keep on going until she couldn’t go anymore, and that’s what she did. Her decline was so swift that she had felt well enough to do everything normally until the last few days before her passing. That was a beautiful gift that she genuinely deserved.

Understanding that nothing in this life is permanent doesn’t make her death any easier to accept, although it does underscore how things change no matter how desperately we cling to them. I strive to practice non-attachment, but who am I kidding? I am too attached to people and expectations. Yes, it does cause suffering, but right now suffering is just what I do.

Eventually I may transcend this. Eventually.

I end this post with a quote from Claire Wineland, the 21-year-old cystic fibrosis activist who passed away from complications from lung transplant surgery on September 2, 2018. She had spent most of her days knowing that her time on this Earth was short and urged people to live life to the fullest: “Go enjoy it, ’cause there are people fighting like hell for it.”

Waiting To Say Goodbye

One of the inevitable parts of being a cancer patient is that you get to know other patients. Equally inevitable, however, is the fact that not everyone has a positive outcome. This week, one of my friends with whom I went through my cancer journey entered into hospice.

We had received our breast cancer diagnoses within several months of each other and occasionally met for coffee as we discussed our treatments. It was a safe conversation, as we were sharing similar experiences with similar fears that only someone in the same situation would “get”. We both enjoyed these opportunities to compare notes and allay anxieties. I had been publicly open about my cancer, but she was more private and circumspect about whom she told, so I was one of the few people who knew her condition.

But as our treatments came to a close, our paths began to diverge. My cancer treatment had been more straightforward because the drugs I was given were well-targeted to my type of tumor. Hers was a more complex situation – a more aggressive tumor with no clear targets, complicated by an existing chronic health condition. While I was declared cancer-free, diagnostic scans found “spots” in other parts of her body, tiny ones that had caused suspicion early on but had been too small to biopsy.

These sports grew larger and a biopsy confirmed her fears. Her cancer had spread. Due to her other health issue, she had not been able to tolerate the most prescribed and effective chemotherapy given to patients with her type of cancer tumor. Therefore, her best option was not available. Immunotherapy was attempted but that failed to produce positive results.

At this point, I was hearing about her disease progression second-hand as she wasn’t open to having coffee. I respect her reluctance to meet with me, because if the tables were turned, I don’t think I would have wanted to be discussing my worsening situation with someone who had been in a more fortunate position. Consider this analogy: you’re on a highway. The cars all drive at similar speeds and travel is pleasant. But if you need to pull over — perhaps there is car trouble — you suddenly feel like the world is passing you by. Every whoosh of an automobile is a reminder that you are not moving. You feel frustratingly stuck and left behind, wondering whether you’ll be able to re-join everyone else on the road again.

Her decline has come abruptly. She’d been living on her own all along, but then came dizziness and aches and pains. It started at the beginning of this past week. By Wednesday, her parents were setting up hospice in their home and had ‘round-the-clock care secured. So fast, so fast. It feels like we need to catch our breaths. No one is prepared for this.

I was told yesterday that she had only days left. I am in shock. I had originally planned to bring over bright gerbera daisies this morning, but decided against it, as she is not able to take visitors.

It’s raining hard today and for the next several days. The weather is uncharacteristically gloomy and foreboding for this part of the country. When she passes, I pray that her transition is gentle and the sun is shining.

In Honor Of Thich Nhat Hanh

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.

Thich Nhat Hanh at Hue City, Vietnam (2007) (in dark vestments). Photo: Lưu Ly

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.

Are We Stigmatizing Cancer Patients?

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.

We can’t automatically assume that if someone has cancer, they must have been engaging in unhealthy behaviors.

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.

Consider lung cancer. We’ve known for a long time now that there’s a powerful connection between lung cancer and smoking. But what of the non-smokers who get this cancer? According to the American Cancer Society, “As many as 20% of people who die from lung cancer in the United States every year have never smoked or used any other form of tobacco.” Isn’t it tempting, however, to immediately jump to the conclusion that if someone has lung cancer, they likely deserved it, since so many lung cancer deaths are attributable to smoking?

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.

Statistics work well for populations but are lousy predictors of what actually happens to a given individual.

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.

The Long And Short Of It: Hair Through Chemo And Beyond, Part 2

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.

February 6, 2018: I didn’t take photos for a number of weeks — probably because once I was convinced that my hair was growing in properly, I mellowed out about scrutinizing my scalp. This was my general look into the early part of 2018, a hat that showed the longer growth (around the back) but hid the painfully short hair on top. I had my very first post-chemo haircut in February.
February 17, 2018: This is after that first haircut. I got a trim around the ears and back, but the hairstylist left the top alone — good thing since it was still really short. I started venturing out without a hat. It was amazing to feel the breeze in my hair!
March 29, 2018: I loved this stage and got a lot of compliments about this look, in part because the hair on top was incredibly soft (all new growth!) and touchable.
April 24, 2018: A view from above showing how full the regrowth was.
April 24, 2018: A front view of the same stage.
May 19, 2018: Now we’re getting somewhere! The hair is noticeably longer and showing more weight.
June 27, 2018: The hair is getting unruly. Need a haircut soon!
August 17, 2018: This marks a little over a year after my last chemo. I got my second haircut in July, and this was the first trim on top. This was another stage that I really liked even though it had a mullet-y feel. I was channeling Rod Stewart here.
August 17, 2018: A view from the top. There was more color creeping back into my hair and it was feeling very substantial.
November 19, 2018: Fast-forward a couple of months. After some more growth, I went for my third haircut. The hairstylist was distracted and did a major chop job on my hair. A bad cut always sucks, but when you’ve gone through chemo, it’s even worse.
January 11, 2019: Almost two months after that last cut, the lack of symmetry was obvious (combed out for effect here); she had chopped off more hair from one side than the other. I waited to let it grow more so that the new stylist (not going back to the old place!) would have more to work with.
January 16, 2019: Finally, went to a highly-rated salon (should have gone there in the first place, but…) and got a cut I love!
January 17, 2019: I can spike it for a seriously edgy look, or keep it tamer so that I don’t freak out everyone at work.

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.