A Year and a 1/2 with Tamoxifen: Collateral Damage

For those unfamiliar with the drug tamoxifen, its purpose is to block estradiol receptors in an effort to decrease the chances of developing hormone receptor positive breast cancer. My own tumor had been estrogen and progesterone receptor positive, so tamoxifen is pretty much standard fare for women in my situation.

The trick is, however, to make sure women keep taking the medication, and the side effects may make that a challenge. The current recommendation for pre-menopausal women with hormone receptor positive cancer is ten years of tamoxifen. When I posted after a year of taking tamoxifen, I was experiencing minor side effects but had managed to avoid the worst hot flashes and night sweats that many women complain of. And even the side effects I had I couldn’t completely pin on the drug.

After a year and a half of tamoxifen, the landscape has changed. My estradiol level, which was 36 pg/mL when I started in November 2017, has dropped to 22 pg/mL. I’m still not having a significant problem with body temperature regulation, although this may change with the summer months.

There are, however, other distressing issues that are becoming increasingly problematic:

1. Memory lapses. I’ve written about this in a number of other posts, but it deserves mention again because it’s not getting any better. I struggle with distractability and loss of focus, which compromise my ability to do my current job. There are details that I simply miss, and I have a hard time juggling things in my head. Yes, I write everything down and follow my own advice, but there are days that I want to give up and go home.

Bottom line, even with workarounds, my concentration makes me ineffective at times. That alone could be a deciding factor in how long I will last on this medication, but it’s not the only one.

2. Fatigue. This has become more noticeable and is affecting my workouts. I feel like I’m losing ground on my fitness. While I’m no stranger to working out even when I don’t feel like it, there are days that I feel beat before I begin, and like I’ve been run over by a truck by the time I’m done. Exercise is such a crucial part of recovery and good health — and a very important part of my life — that it seems ridiculous that my treatment should be getting in the way of it!

Detachment from affection feels lonely and isolating.

3. Loss of libido and emotional attachment. This would be easier to take if I were single and living alone, but dealing with this side effect in the context of a relationship is getting progressively more difficult. It is not simply romantic desire that has dwindled; feelings of affection for my husband and children have dulled. I know I love them and feel a strong sense of responsibility for them, but there’s a numbness where there used to be warm emotions. It breaks my heart because I don’t want to feel this way.

4. Depression/mood swings. On the plus side, I know what’s going on and am actively working with my counselor on dealing with these fluctuations, but these are side effects of the drug, so as long as I’m taking it, I feel like I’m trying to bail water out of a sinking boat with a spoon.

5. Argh, again with the hair! After regrowing my hair following chemo, it has been thinning from tamoxifen. This may seem insignificant in the grand scheme of things, but if you’ve ever lost your hair to cancer treatment, you know that it can be a emotional experience. Getting your hair back is a big deal, but thinning hair brings back a sense of helplessness and lack of control.

Notice that the effects above are not readily apparent — even the thinning hair might not be as noticeable to an observer as it is to me. It’s easier to understand visible health-related consequences, but we as a society have a hard time getting our head around (or expressing concern for) the importance and impact that emotional factors have on quality of life. You can’t see my concentration difficulties or depressive mood or grief over numbed affection, but they affect me as strongly as do any physical symptoms.

I’m not forgetting how lucky I am.

This is a good place to stop and mention gratitude. The fact that I write this post as a former cancer patient on a maintenance drug to help keep my cancer from re-occurring…that is a privilege. My good fortune is not lost on me, and it is something I think about every single day. We have come a long way in treating my type of breast cancer and I am the beneficiary of those advances.

But there is also an expectation that now that chemo and radiation are done and my scans are clean, I should be “back to normal”. I would like nothing more than that, but I’m not there.

This brings me to a deal I made with myself: I promise to do my utmost to last through five years of tamoxifen. However, years 6-10 remain to be seen. At some point, the scales will tip and quality of life will win out over whatever purported percentage of increased survivorship the full decade of the drug can offer me. This offers me some strength to push on and focus on the present, doing the best I can with what I have.

Sleep, the Ultimate Good

I hold sleep as one of the most critical elements of self-care in our lives. Get enough sleep and the whole world looks brighter. But ignore the call of the mattress and dire consequences await.

This is especially true for me, as I slog through the ever-changing side effects of my current anti-cancer therapy (Tamoxifen). The amount and quality of sleep I get sets the tone of my day and determines my resilience to work and life stress. In addition, sufficient sleep has a significant positive effect on my cognitive functioning, which took a hit from cancer treatment.

But this is not limited to my personal experience. The more we learn about the science of sleep, the more we understand how our electronics-driven lifestyles disrupt sleep patterns and affect us as a society.

Dr. Matt Walker (UC Berkeley) is a strong proponent of sleep, and for good reason. He outlines in his TED talk (19:19) below some of the latest research on the repercussions of not getting enough shut-eye, and it’s not pretty. As a cancer survivor, I find this information particularly sobering. While I’ve written about the downside of placing superhuman expectations on ourselves, having THIS kind of superpower, getting sufficient sleep, is literally life-preserving.

Let’s start with “testicles”…

Dr. Walker’s two main suggestions for good sleep? (14:16 in the video)
1) Keeping a regular sleep schedule, retiring and rising at the same time regardless of day of the week.
2) Keeping your bedroom temperature at about 65°F (no mean feat without A/C in the summer months!).

For many of us, improving the amount and quality of our sleep will take concerted planning and possibly sacrifices. We live in a 24-hour-a-day world and sometimes we try to keep up with that ’round-the-clock pace; ultimately, however, we pay the price for it. There should be no question that sleep is critical to our well-being and it’s time that we give it the priority that it deserves.

A Mini-Guide to Surviving Chemo Brain; or, “Wait, what were we talking about?”

While it’s not my intention to write advice columns for breast cancer patients, because I posted ‘getting through chemo‘ tips, I might as well follow up with what I’ve learned about handling the memory and focus issues associated with chemo brain.

Note, first, that chemo brain may not be all chemo. There may be various factors involved (chemo, tamoxifen, onset of menopause, even the tumor itself) and it’s difficult to tease out which one is the main culprit. Be that as it may, it still sucks when you’re standing in your closet, wondering why you went in there…for the tenth time today.

I put a lot of blame for this lack of focus and fleeting short-term memory on the estrogen-blocking drug tamoxifen, which is given to women with hormone receptor positive tumors. I can’t tell you how many physicians have assured me that it’s a “great drug” for decreasing risk of tumor recurrence. And an equally large number of women who have told me that their lives improved after they got off it.

Regardless, for now chemo brain is a fact of my life, so in the spirit of accepting what I cannot change, here are my best practices for making sure that chemo brain doesn’t get me fired from my job:

At least I know it’s there…
  • Write down your thoughts. And do it immediately. I’ve actually lost thoughts as I was scrounging for a writing utensil. If I have to remember something, I put it in writing, often on a sticky-note that goes on my computer monitor or bathroom mirror. Some place that I look at multiple times a day. I do this to excess, with notes everywhere, but it works. It also decreases my stress levels because I know the thought has been recorded.
  • If you can’t write it down, repetez! Repeat it in your head. Sounds obvious and overly simplistic? Perhaps, but you only need to do this until you either no longer need the thought, or get to a place where you can jot down a note. Of course, I ruined the last part of a meditation retreat for myself because a load of great post topics popped into my head and I had no place to record them. On the bright side, I realized I could juggle seven items in my head for a half hour if I concentrated on them!
  • Narrate what you’re doing. I’ve had to resort to this, especially when working on a multi-step process where accuracy counts. Yes, I’ve made mistakes on the “I-must-be-smoking-crack” scale, and this is often one of the best ways to avoid that. When I hear myself say what I’m supposed to be doing, I stay on task and am less likely to wander off.
  • Avoid distractions. This is probably the most critical piece of advice I can offer. Distractions are death to my thoughts because I go down rabbit holes before I’m even aware of what happened. The Google page of my Firefox browser at work suggests articles to read based on my browsing history, and let me tell ya, there are few feelings worse than suddenly realizing that you are lost deep in an article on body language when you should have been finishing up a report that’s due in a hour. How’d that happen? Anything that breaks my concentration — even a tickle of a distraction — can sidetrack me for minutes before I come to my senses.

Bottom line is, stay present. If there were one general rule of thumb to preserve your functioning while in the grips of chemo brain, that would be it.

The above hints may seem obvious, but I went through a lot of frustration until I accepted that my brain had changed and it couldn’t be ‘business as usual’ anymore. Once I started working around my limitations, things got a lot easier.

Getting Through Chemo

My previous post was about the side effects that I experienced from my first chemotherapy infusion for breast cancer. However, side effects are specific to the individual and depend on a variety of factors. My greatest concern was that someone about to embark on chemotherapy would read about my experience and immediately assume that it would be theirs, also.

So I’m aiming this post directly at newly-diagnosed breast cancer patients, in an effort to provide helpful (I hope!) suggestions for getting through cancer and chemotherapy. The below is not supposed to be an exhaustive list — rather it contains random things to consider (in no particular order):

You’ve got this.
  1. You can get through this. And I don’t mean that in a “rah-rah” way like a well-meaning friend who makes it their personal crusade to make sure you “think positive” for a positive outcome. That’s BS. But please know that there are medications and suggestions available to manage chemo symptoms, with a lot of advances made in the last decades, and you should make use of all of them. Ask your oncologist.
  2. Take it step-by-step. If there’s one thing that a cancer diagnosis is, it’s overwhelming. Once you get past the initial shock, there may be more diagnositics to run and a host of treatment options to consider. You don’t have to take on everything at once. Sit down. Breathe. Clear your head.
  3. Know your sources. Everyone and their cousin may have some miraculous piece of advice that they claim helped someone. Great for them. Everyone’s situation is different, so stick with reliable sources. This will generally be your healthcare providers, but if you feel you need to, get a second opinion. Or a third one. It’s your right because it’s your health. And tread gingerly through the internet!
  4. Everyone’s situation is different, as mentioned in the point above. It’s worth repeating, again and again. As a matter of fact, a number of us have made this our mantra. I have suffered more from the fear of going through what someone else did than I actually did from the thing itself. That says a lot. You have a right to your own experience so feel free to protect it.
  5. Stay informed. Once you get reliable sources, keep on top of information related to your condition. Too stressed or tired? Ask a close friend or relative, or in the absence of those, make use of the nurses at your cancer center. There is a push in medicine today to fully support the patient, and that includes providing information.
  6. Ask for/accept help. If someone offers to clean your kitchen or prepare a meal, take them up on it. I had a mom offer to pick my son up from school on the days after my chemo and it made a huge difference! Talk to your healthcare provider about getting assistance at home if you don’t have anyone to help you.
  7. You didn’t do anything to deserve this. Let me be the first to absolve you of responsibility. People do not purposefully bring cancer onto themselves, nor do we know enough about what causes most cancers to make you liable for your disease. Someone suggesting that? You have my permission to kick them in the teeth. (Just kidding! Don’t do that; save your energy for recovery.)
  8. Prepare your area. A bedside table with all the things you’ll need to ride out chemo side effects at the ready will make things easier. I used a chair without a cushion to keep necessary medications and a glass of flat ginger ale on hand.
  9. Set your boundaries. You may not want visitors/advice/your aunt’s casserole and that’s okay. If you have a partner or friend to act as a gatekeeper, perfect, but if not, feel free to pull the cancer card and ask people to leave you alone, guilt-free.
  10. Make use of freebies. Ask your nurses about organizations or individuals who offer services at low or no cost to cancer patients. I was told of a salon that provided free head-shaving, wigs and scarves and scarf tying lessons, and of an aesthetician who gave free facials. There is a program called “Look Good, Feel Better” that provides high-end makeup and application tutorials, including helpful things like drawing on eyebrows. See what’s available in your area.
  11. Distract yourself. And do so with pleasant things, whether it’s watching rented movies, taking a drawing class, going for a walk. Be mindful as you’re doing so, truly enjoying each moment. Your cancer center may have various activities available for cancer patients.
  12. Breathe. I know I said this before, but it’s worth repeating. Breathe.

I’ll see you on the other end of treatment!

Mindfulness Apps I Love: “Plum Village”

Much gratitude to SmileCalm who brought this meditation app to my attention!

So far most of the mindfulness apps and programs that I’ve written about have reflected a more secular version of mindfulness (Insight Timer is an exception, because it encompasses a very broad range of practices).

The opening screen invites you into Plum Village…

However, Plum Village is the meditation app of Thich Nhat Hanh’s Plum Village Tradition of Buddhism. It is beautiful in its simplicity, reflecting mindfulness authentically — and appropriately so, as Thich Nhat Hanh is considered the “father of mindfulness”.

Things that ring true for me:

1. It is completely free. There are no in-app purchases or upgrades, and certainly no ads. You download it and have access to everything. It is open to everyone.

2. It is uncomplicated in design, allowing easy navigation within a simple serene tangerine-colored layout.

3. There is no competition inherent in this app: no meditation counters, no record of meditation “streaks”, no gold stars for hitting meditation milestones, nor a way to compare your progress against that of others. It focuses only on the selection that you are doing now. And when you are done with it, you are done. No clinging.

A partial view of some of the categories in the “Meditations” section.

There are five sections, buttons for which run along the bottom of the screen. “Resources” contains chants, poems, mindful movement videos, in addition to spoken and written teachings by Thich Nhat Hanh. “Practices” could be considered the ‘how-to’ section as it explains various mindfulness practices and concepts.

There is a large selection of guided meditations in the “Meditations” section. They are based on Buddhist values, and while most are lovingly presented by monks and nuns, there are some led by Thich Nhat Hanh himself. To round out the collection, there are clips of nature sounds to use as a background to meditation.

The “Ask Thay” section (Thay, or “teacher”, referring to Thich Nhat Hanh) contains a long list of questions posed to the Zen Master with audio clips of his gentle responses. While these within themselves are not meditations, I found myself mesmerized by his words.

But the section I’ve utilized the most is “Bells”. It’s possible to set up the sounding of a ‘bell of mindfulness’ for intervals ranging from every five to sixty minutes. I’ve let that run for the entirety of my workday, setting up the bell to sound every 10 minutes, as a reminder to stay present and focused. When I get lost in work, the bell declares its presence, easily cuts though the noise in my head and serves as a reminder to take several deep breaths.

I have been using this app differently from other mindfulness apps like Calm and Insight Timer. Plum Village is more instructive, and as I am interested in deepening my knowledge of Buddhist Dharma, I use it not only to calm my monkey mind, but also as a learning tool.

Of all the programs and apps I have used, Plum Village feels the most authentic, as if I’m coming home to the roots of mindfulness.

Mindfulness Programs I Love: “Mindfulness-Based Stress Reduction”

Although I may never be able to prove it, I’m willing to bet that stress played a role in the proliferation of my cancer.

As a result, getting my stress response under control was a high priority, so I started a meditation practice and once the toughest parts of my treatment (chemo, radiation) were done, went searching for a formal class to address anxiety.

My clinical counselor had told me about a book called “Full Catastrophe Living” by Dr. Jon Kabat-Zinn. As it turned out, Kabat-Zinn had been a long-time meditator and, drawing on both Buddhist Dharma and scientific research, developed a stress-reduction program for patients at the UMass Medical School in the 1970s called Mindfulness-Based Stress Reduction (MBSR).

So when I found a Center for Mindfulness at a local university, I jumped at the opportunity to take that same flagship MBSR course.

This is an 8-week class with an additional full-day retreat. The curriculum has been developed to introduce students to mindfulness and help them, over a two month period, develop a practice, both formal and informal to manage stress in their lives.

It is also not cheap! The non-discounted version may cost about $600, depending on where and when you sign up. If I hadn’t had cancer and therefore a powerful reason for needing in-person guidance in mindfulness meditation, I would have considered myself priced out of this course, instead opting for a self-paced, free online version, such as Palouse Mindfulness.

But I used the significant price tag to motivate myself to do each and every homework assignment. The classes themselves were 2.5 hours a week, with daily home practice lasting about 45 minutes to an hour. That’s no small commitment! I had to move around my schedule to be able to fit the practice time in, and even the Center for Mindfulness itself recommended that if you could not accommodate the home practice to wait for a time that you could before signing up for the class.

The teachers were warm and supportive. They genuinely cared about student progress and themselves had a regular practice in addition to having spent time and resources on their own teacher training. As such, the instruction was excellent.

There were a number of resources for the students, including audio and video programs, which are also available to the general public. Currently, as an MBSR alumna, I have access to all the day-long mindfulness retreats for students free of charge. This gives me an opportunity to immerse myself into silent meditation for substantial periods of time in a similarly conducive environment.

The development of a mindfulness practice has more to do with the effort of the student, rather than the expense of a class.

I was struck by how quickly the class registration filled up, and how during the first session, when asked why we were taking the course, so many of us cited the amount of stress and anxiety in our lives. It is a sign of the times that so many people are willing to pay a significant amount of money to take a class to help them get some semblance of control over their inner state.

Actually achieving this was harder than simply paying the cost of admission. This class began with about thirty of us, but fewer than half made it to the very end. A number of people admitted being unable to complete the homework. Some gave up completely. There were others that came for several sessions but then never returned. Everyone was looking for help with stress but not everyone was successful.

As a secular version of Buddhist mindfulness, the course does justice to the tradition. While the expensive registration fee may be off-putting for some (many?), there is tuition assistance available, which I feel is important. As I’ve written before, I don’t feel that it’s appropriate to make mindfulness available only to those rich enough to afford fancy classes.

But in the end, regardless of what type of mindfulness instruction you utilize, what matters is how much effort each student puts into the practice of being mindful.

And that is available to all.

Mindfulness Programs I Love: “Take 5”

Setting time aside for formal meditation is important to me, but what about the hours of the day that I spend off my cushion? As dedicated as I am to my meditation practice, it took a while to find a way to consistently bring mindfulness into the rest of my day.

My workplace was offering an informal program through a Canadian company called MindWell-U, and since I’m always up for trying out anything mindfulness-related, I signed up.

The loading screen of my MindWell-U account. This provided an opportunity to set an intention for the session.

The concept is called “Take 5”. Over a period of 30 days, you are provided a daily computer-based lesson that illustrates different aspects of mindfulness. More importantly, every day you also receive cues to remind yourself to “Take 5” – that is, to take a time-out, settle and focus on five deep breaths. You are provided “Take 5” guidance via a sound clip. As the days progress, the types of cues change. The idea is to notice the present and stay as mindful as possible, establishing space between yourself and emotional reactions.

During every lesson, the program suggested cues for the day (for instance, brushing your teeth) to use to stop and notice where your thoughts are. These changed as the days passed, and by the end, we were encouraged to create our own cues.

Aspects that made a huge difference to me:

1)       Incorporating mindfulness into everyday life: When I wasn’t meditating formally, I would often get lost in day-to-day stressors. The cues provided by the “Take 5” protocol, simple as they were, were what I needed to bring mindfulness into the rest of my life. It also made me more aware of where I already was being mindful, even when I didn’t identify it as such.

For example, when I exercise I have no problem staying present during difficult workouts, and this makes them easier to complete. One benefit of this awareness is that I am more compassionate towards those who are not able to maintain the same focus and I appreciate why they may “psych themselves out” before they’ve even begun exercising. This kind of understanding makes me less judgmental.

An example of one video that provided easy-to-follow messages which reinforced the benefit of being mindful.

2)      Daily video clips: These were minimalistic illustrations, using the color red to signify getting swept up in thought and emotions, and a cool blue to signify being mindfully present. Topics were relevant, the videos were entertaining and short, and were in small enough bites to provide something to work on for the day without feeling like an obligation. Examples of daily lesson topics: “Thoughts Are Not Facts”, “Reversing The Stress Response”, “Turning Off Autopilot” and “Fight, Flight or Take 5”. I found myself looking forward to each session, which I completed in the morning at my desk, prior to the start of my workday.

A sticky note on my computer monitor reminding me to be present by pausing, taking some breaths and feeling into the moment.

3)      Time frame: 30 days is the perfect length of time for creating a new behavior. Again, I already had a solid meditation practice in place; the trick was to take that mindful attitude with me and apply it to the rest of my life.

Important (and sobering) note: it bears mentioning that mindfulness has taken off and is currently being applied to all aspects of our lives, often being a huge money-maker for providers. I myself have invested in programs and classes in the name of getting solid guidance to develop my practice. Ironically, this seems to go against the concept of mindfulness itself, which truly should be available to all, regardless of ability to pay for shiny apps and expensive sessions.

Furthermore, isn’t it antithetical to the Buddhist tradition for companies to encourage their employees to take such classes with the expectation that a more mindful workforce will ultimately result in higher profits?

While I am grateful for any opportunity to expand my mindfulness meditation practice, the above gives me pause. My intention, then, is to use tools like these that further my growth in a way that will also benefit those around me.