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.
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.
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:
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.
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 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.
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.
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!
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.
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.
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.
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.)
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.
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.
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.
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.
Breathe. I know I said this before, but it’s worth repeating. Breathe.
Much gratitude toSmileCalmwho 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).
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.
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.
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.
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.
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 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.
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.
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.
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.
In my last post, I sang the praises of the Calm phone app. However, I admitted that a number of the features are only available to users who subscribe. This was an investment I chose to make because I was dealing with a cancer diagnosis and needed quality meditation support to help with my anxiety.
I also didn’t know about Insight Timer at the time.
For those who are looking for more free options, you’d be hard-pressed to find a better mindfulness phone app than Insight Timer, which I have grown to value highly and use daily. While the app does have a subscription option, I’ve been thoroughly impressed with what it offers to unpaid users.
These are the features that I adore:
1) 15,000+ Meditations! That’s gotta be some sort of record. And there are new meditations being added all the time, which means that you could do a different meditation every day. I constantly keep finding new favorite meditations…
2) Variety, variety, variety! The number of options is mind-boggling. Choose from different teachers, lengths, recording types (meditation, music, lecture), and of course, a gazillion categories that encompass any imaginable meditation benefit, origin and practice, not to mention an increasing number of languages — I speak a rather esoteric language from a small country and was still able to find a couple of meditations in the lingo. Truly, it’s worth searching through the app to see what a broad selection is available. If you’re interested in meditating to it or about it or because of it, chances are Insight Timer has it.
3) The Timer: This is a fully customizable meditation timer that includes a variety of background sounds and meditation bells to choose from, with the ability to set the session length and bell intervals. It’s ideal for those times when you want to meditate without voice guidance. I particularly appreciate that once your session ends, the background sound continues to play in case you want to extend your time.
4) And most importantly, most of the features are FREE! Quite frankly, meditation really should be accessible by all. It doesn’t seem right to limit people’s access to something like this based on their ability to pay for it. Insight Timer does have a “supporter” option, but as the developers explain, the fees support the umpteen teachers and composers who provide content, in addition to keeping the site free for most of us. Read more about Insight Timer‘s philosophy here.
For those who decide to subscribe and support the app, there are a number of benefits available, such as a selection of 10- and 30-day courses, a curated Daily Insight meditation every day, high-quality audio, offline listening and the like.
The only downside to such an overwhelming amount of meditations to choose from is that it can become, well, overwhelming. Additionally, you don’t always know what you’re getting due to the variety of teachers posting material, so you might need to do a little searching around. It’s almost guaranteed, however, that you will find something to suit your needs.