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.

Index Published

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!

The Long And Short Of It: Hair Through Chemo And Beyond, Part 1

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.

May 13, 2017: My first chemo treatment was April 27th and just over two weeks later, my hair started coming out in handfuls. I had long hair so the loss was noticeable and very distressing. Time for it to come off!
My husband started by taking off the bulk of my ponytail first.
I got to live out all my punk hair dreams…
…and even spent a few minutes channeling Riff-Raff from “The Rocky Horror Picture Show.”
Finally it was done. No looking back! As miserable as it was losing my hair and crying through most of the head-shaving process, I now felt like I had a modicum of control over this whole crazy situation.
June 8, 2017: This was the day of my third chemo session. Oddly, my hair had actually grown but then seemed to freeze. If I pulled on individual hairs, they would come out easily.
Needless to say, I didn’t mess with them! While it’s not readily apparent in the photos, there’s way more bald scalp than hair there, with significant loss at the front.
July 3, 2017: Yeah, not looking so healthy here. Loads of the tiny hairs had given up and dropped out, and I was having issues with a dry, flaky scalp. Honestly, I hadn’t realized that it looked this bad until I saw the photo.
July 20, 2017: My scalp was confused. Some obstinate hairs continued to grow, but most hadn’t, giving me a great view of the horrible moles on my head!

August 18, 2017: My last chemo had been August 10th. There were only enough of these longer hairs on my head to make me look like Yoda, but without the big ears. You can see the rough shape that my nails are in (but that’s a story for another post).
September 6, 2017: There were hairs on my head, but they were not really growing in. It had been a month since my last chemo and I was hoping to see significant signs of life. But, nope.
September 16, 2017: Here’s one of those never-say-die hairs. I was also noticing downy, baby-chick hairs but no appreciable coverage. Wow, I have huge pores!
October 6, 2017: It had been almost two months since my last chemo, and I was convinced that I should be getting more growth. My hairs were super-fine and my scalp squeaked when I tried to run my fingers through them. See the light shining off my head? I could blind someone with that!
October 11, 2017: Yes, this photo was taken only 5 days after the one above it, but I was starting to get desperate and taking loads of photos. I was convinced that I should be getting more growth than I was, and had spent too much time on cancer forums reading posts by women whose hair hadn’t come back at all (bad idea!). I was experiencing growth but their fine texture made it seem like there was very little there.
October 17, 2017: At this point, there was a mixture of sparse longer hairs and the super-soft fuzz, but the overall view still screamed, “BALD!” Family members enjoyed patting my head and cooing.
November 2, 2017: Almost three months after finishing chemo, I still saw light glinting off the front of my scalp. I could wear hats because the back of my head had more hair coverage. Regrowth was happening in a sort of reverse male pattern baldness. There WERE little sprouts on the front of my head, but they were taking their own sweet time.
November 11, 2017: Finally! The hairs in front were definitely coming in. All the growth was soft and fine, but it seemed like the follicles had woken up. I found it easier to be patient now that there was definite promise of a full head of hair in my future.

Part 2 covers hair growth through 2018…