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What’s All This, Then?

“If you want a happy ending, that depends, of course, on where you stop your story.”

Orson Welles
director, actor and producer


Honestly, this blog is supposed to be funny, but sometimes it’s hard to get there.

I am a cancer survivor. You cannot imagine how good it feels to write that. This blog was established to help me document my journey, process my experiences and, ultimately, inch away from thinking of myself as a cancer patient and towards being a mindful, peaceful and accepting (that’s a tough one!) creature on this Earth. Be warned, some of my posts are self-indulgent and unnecessarily wordy; I have much respect for anyone willing to slog through them.

Right now, this blog is anonymous: I need to stumble through my feelings, complain when I feel like it and be blunt when necessary — and I need a safe space to do it without fear of judgmental glances. While my goal is to keep this light-hearted, I realize that I have the pleasure of being a survivor and chuckling about my cancer experience; there are many who are not granted that opportunity. Writing this blog is a privilege.

Cancer sucks. It’s an indiscriminate spectre that has haunted the lives of practically everyone at some point, whether relatives, friends or ourselves. For me, cancer cannot pass into faded memory quickly enough, but at the same time, I am infernally curious about the disease and how it has changed me.

So here are my facts:

In early 2017, I was diagnosed with triple-positive (estrogen+, progesterone+ and HER2+) breast cancer. The lump was 1.6cm in diameter, removed at the end of March, along with three sentinel lymph nodes that were revealed to be unaffected. Chemotherapy (Taxotere & carboplatin) started a month later and lasted the entire summer, 6 hefty courses, one every three weeks; adjuvant therapy (Herceptin, a monoclonal antibody) also started at this time, but went for 17 courses, ending in April 2018. Daily radiation treatment lasted six weeks through autumn of 2017. A 3-D mammogram in February 2018 showed nothing, in a good way. That marked my first year without the tumor.

I wish I’d been able to write in 2017, but my head wasn’t there. I was not processing, I was existing and enduring. After my final Herceptin infusion, my port was removed and I turned around to see what had happened. It took several months of writing before I tossed out my first post in September 2018, privately at first, and then, “Hello, world!”

It’s going to be a bumpy, unpolished ride. Bear with me.

In Memoriam: Thich Nhat Hanh, “I Have Arrived, I Am Home” [VIDEO]

Since my last post, my family and I were diagnosed with COVID. We are doing well and experiencing mild symptoms.

I’d like to devote this post to a beautiful documentary that came out on January 22, 2023, Vietnam time (January 21, 2023 in the US), a year to the day of the passing of Zen master Thich Nhat Hanh, aged 95, known as the “Father of Mindfulness”.

Entitled I Have Arrived, I Am Home (Plum Village YouTube Channel), this film covers the last few years of the life of Thich Nhat Hanh — also called Thay, or “teacher” — after he returned to the Tu Hieu Temple in Vietnam at which he was ordained a monk many decades prior.

“I Have Arrived, I Am Home” – 41:46 min

Under 3/4 of an hour long, the film beautifully illustrates how Thay, in his post-stroke years, returned to his roots in preparation for his passing (“transition”). It documents his death and funeral and the effect that his life has had on the existing monasteries of the Plum Village Tradition, which he established.

The writing of Thay greatly touched me during my cancer journey, and I Have Arrived, I Am Home is a lovely video that depicts his kindness and care for his students. This was not created to “convert” anyone but only to teach by example. I hope you take some time to view it, especially as our world continues to experience much unrest and pain.

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If you are interested in learning more about Thich Nhat Hanh’s mindful life, I encourage you to refer to this article from Lion’s Roar magazine, published on the day of his death last year.

I had the pleasure of attenting a “Day of Mindfulness” at the Deer Park Monastery (Plum Village Tradition) in Escondido, CA in Summer 2019 and described it here.

Navigating Anxious Moments with Breath and Muscle Release

When you can’t control your anxious thoughts, what can you use to get a foothold on stability?

This was the issue for me for years, if not decades. During panicky times, I’d close my eyes at night and see a montage of fleeting images like a rapidly changing patchwork quilt that I couldn’t stop. It was kind of like at the beginning of a Marvel movie, where images whiz by you. Except that for me there were no superheroes or rush of excited anticipation.

This is not an ad for Marvel. The first seven seconds of this 11-second clip represent what I used to “see” during middle-of-the-night panic sessions: just flashing images passing before me.

Anxiety meant being blanketed by nausea and fear that blocked my view of reality. I couldn’t see past any of it because the sensation was all-encompassing. Mindful grounding has enabled me to get a hold on the edge of that blanket and pull it up ever so slightly to let some light in.

That was accomplished by two simple things that I could control in the midst of everything else I couldn’t:
1) changing my breathing pattern
2) identifying and releasing muscle tension

I might not have been able to slow the thoughts, decrease my heartrate or relieve the nausea directly…but the combination of the breath and relaxing my muscles provided a path that led around those things and quietly affected them behind the scenes.

First, start with your breath

Bring your attention to the breath and consciously slow it down. Start by trying to make your inhales and exhales the same length, adding a second-or-two pause in between. Depending on your level of anxiety, this may take some time if your breathing has been rapid and shallow. Any slowing is helpful, especially at the beginning. Be compassionate and patient with yourself.

A hand on the belly makes it easier to focus on breathing into the abdomen.

I find it easiest to deepen the inhale first, drawing the breath into the belly. Placing a hand on the belly helps keep your focus there as the sense of touch supports grounding. Try a deep inbreath, pause, and a lengthened outbreath. Blowing out through pursed lips helps control the air flow and draw out the exhale. An exhale that is longer that an inhale helps slow your heartrate. Belly-breathing makes a big difference.

Aim for an inbreath of 4 counts, pause and hold for 2 counts, exhale for 6 counts.

Some guidance recommends that you place one hand on the chest while you have the other on your belly. However, in my experience, if you are particularly anxious it’s helpful to keep your focus off a racing heart. Keeping your hand on your belly is enough.

Next, relax muscular tension

Releasing the tension in your body will help calm you. We often don’t realize how much tension we’re holding until we mindfully scan our bodies.

Stretch in whatever way feels good. Don’t be afraid to take up some space.

First, streeeetch the way you’d stretch after waking or when you’ve been stuck in one position for a while. Imagine you’re a sleepy bear coming out of hibernation. Too often when stressed we crumple in and hunch over — opening up through a stretch may signal to the body that it’s safe to come out.

Then, roll your shoulders forwards and back. Gently roll your head in a front semicircle, ear to ear, paying attention to how it feel to move in that way. So many of us hold tension in the neck and shoulders and we squeeze muscles there without realizing it. Spend some time loosening up these areas.

Feel into your face. Raise and lower your brows several times. Relax the muscles around the eyes. Open and close your mouth and wiggle your jaw. Clenching in this area can cause headaches so try to release tightness here.

Turn your attention to the rest of your body. Are you knotted anywhere? Simply the process of noticing where your muscles are tightening can change your focus from anxious thoughts in your head to sensations in your body, keeping you present and less likely to get trapped by fears.

Aim for progress, not perfection. This is a learning process, so don’t wait for anxiety to reach a peak before starting. Practice when you’re calm so you know what a lengthened breath and relaxed state feels like in your body.

Those of us who have lived with anxiety would love to hang out in peaceful bliss all the time, but that’s not the reality of life. However, nurturing calm through techniques such as breathwork and muscle relaxation lessens the distress of anxiety-provoking situations and helps us find a sense of comfort within our discomfort.

2023: Thriving at Last?

Some of our greatest strengths are born in our lowest moments.

Unknown

While I try not to keep returning to stories about “how far I’ve come” since my breast cancer diagnosis almost six years ago, for the start of 2023, I wanted to do a teensy bit of navel-gazing and take stock of how different everything looks compared to how it did after my 2017 diagnosis…and even from just a year ago.

My breast cancer story started the same way as it does for most of those diagnosed with cancer, with a lot of shock and disbelief. There’s nothing new or special about that.

However, for me cancer had been my ultimate health fear, the worst thing that I could image happening, particularly because I grew up during a time that cancer patients had poor prognoses and I had lost dear family to the disease. My exercise, dietary and lifestyle habits were in part driven by health concerns and that’s why my eventual diagnosis felt all the more “unfair”.

I have survived almost six years! But I had been so angry about my diagnosis that it took several years to appreciate how much of a victory that was.

The absolute worst health catastrophe that I feared could happen to me actually did happen…and I was too bitter to appreciate that I survived it.

Not only did I survive the treatment, I have slogged through lasting side effects. Trapped by fear and anger, I lost the initial positivity that I’d experienced right after completing chemo and radiation — I mean, after all that almost anything is going to feel better — and became mired in frustration.

When I finally managed to get through my head that there are many bad things that happen to people who do not deserve them, and many far worse than my own, I was able to move past my preoccupation with myself. That took longer than I’d like to admit.

But allowing that time to work through anger and fear until I got to the point of acceptance was so important for me. And the magical part of this is that acceptance was followed by an unfettering of my thoughts. Holding that bitterness had taken so much energy that little remained for other, more important things.

At the time of my diagnosis, I was fearful and bitter. A mere year ago, I was still angry. But in 2023, I have given myself the gift of freedom from that negativity and that allows so much space to breathe deeply and turn my attention towards better things. It was that release that took with it a nice chunk of anxiety that had likewise held me captive.

And now, instead of being just a survivor, I am finally feeling like I’m thriving.

New Year, New Approach to Resolutions

With the start of the new year, many of us set lofty goals with the intention of changing things that we do not like about ourselves.

But so many of those goals are not realized. You may be aware that it takes approximately 21-28 days in order to create a new behavior, but a cursory search on the internet suggests that most people don’t even last that long.

New Year’s resolutions are not known for their longevity!

There are certainly behavioral modification tricks that you could use to establish a new healthy habit, but if you haven’t had success in the past, perhaps it would be worth taking a different tack this year.

Instead of doing something to immediately “fix” yourself, try sitting with the acceptance of who you are right now.

Release the pressures of becoming that person that you think you want to be and spend some time getting to know the ins and outs of the person that you already are.

You may argue that there are things that you must change within yourself, that there are challenges you must take on and healthy behaviors that you must establish. I am certainly not telling you to give up on those.

Sit quietly with acceptance of that person that you are right now, in your current “unchanged” state.

But it’s possible that you need a little self-compassion before plunging into making big changes.

So just for today, consider what an amazing being you are. Beautiful as you are right now. A mosaic of the years that you’ve already lived, showing the marks of your experiences. Some of those might be scars, but that’s okay. They have all come together to make that unique being that is “you”.

Then consider what this “you” really needs. Not late nights and fast food meals. Not being jammed into an office chair, hunched over a desk, or crumpled on a couch trying to distract yourself with TV shows about other people, neglecting the needs of the person you are.

Through self-compassion, find your reasons to show yourself the love that you deserve.

You need the freedom to breathe deeply, be nourished and allowed to stretch out your limbs. To close your eyes and be still, to take a break from harsh lights and electronic screens. To move, whether it’s a jog-walk to the park or dancing in your living room.

Consider how you can do something supportive of yourself and the world in which you live, out of love. Those changes that you want to make, do they nuture your body? Do they lift up others or help care for your surroundings? That challenge that you wish to undertake, will it help you grow, or just mindlessly try to hammer you into something that you are not?

And once you’ve accepted where you are now, can you find a way to love and guide yourself through establishing new behaviors — because it is your choice to do so — and *not* fight the things that will contribute to your health and well-being?

Take some time to think about all of this…and proceed from there.

HAPPY NEW YEAR! ❤

Memory and Attention Adaptation Training (MAAT): Finding a Way to Deal with Chemo Brain

So, as I’ve written about in previous posts (here and here) there’s this thing called ‘chemo brain’, and contrary to what you might find when you google it, it doesn’t necessarily go away after you finish cancer treatment. It also has a longer name: Cancer-Related Cognitive Impairment (CRCI).

This can be particularly frustrating for those of us who are expected to perform “as before” (meaning, prior to getting cancer) and yet increasingly fall victim to distractions, searching for words, forgetting things as soon as we’re told them, and in general, wondering whether we’ve now come down with a mix of dementia and ADHD.

You’ll need more than a bouquet of forget-me-nots to navigate post-cancer issues like CRCI. Classes like MAAT can help.

There is help, however, and it’s arrived in the form of a class called Memory and Attention Adaptation Training (MAAT). I had the opportunity to take this 8-week class in Fall 2022 and it recently concluded.

The class is intelligently put together, first showing students the science about what they are experiencing (and that it’s not early-onset dementia!), and then over the next two months, teaching tricks and techniques for helping navigate the new landscape of CRCI.

This includes learning stress management techniques, improving sleep and pacing oneself, making self-care a high priority. But the majority of the class was devoted to learning how to use methods such as rehearsal/repetition, situational awareness, scheduling, distraction reduction, active listening and imagery. These help us maintain focus and retain information while reducing overwhelm.

It takes more than littering your desk with post-it notes. We need to create an environment that supports memory storage and distraction reduction.

I took the class through SHARP Hospital in the San Diego, CA area as part of their second cohort. It was taught by a clinical oncology social worker (herself a breast cancer survivor) and a speech pathologist, and their expertise made the class even more worthwhile. While the first cohort was in person, we in the second cohort had the benefit of taking the class via Zoom, which helped with accessibility, especially for those of us who are still working.

And a number of us there were already about 3-5 years out of treatment, which dispells the notion that chemo brain only lasts during treatment. Our cohort members’ ages ran the gamut from early 30s to well into retirement, illustrating that CRCI can show up in any cancer survivors regardless of age.

Realizing that this is affecting many more people that have been reporting symptoms, the SHARP Health Care system has opened the classes to individuals in other health systems in the San Diego area.

No matter where you live, if you are a cancer survivor experiencing some form of cognitive impairment, I urge you to 1) tell your oncological team (They need to know this is happening!) and 2) ask them about the availability of MAAT classes in your region. MAAT is not currently being offered widely, so please make your needs known so that this service can be expanded to those who need it.

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Curiously enough, one of the first assignments we had in the MAAT class was to work with gratitude – yes, it really does help! Such a perfect practice to begin at this time of the year! Happy Holidays to all! ❤

Finishing Faster: Exploring Shorter Radiation Treatment for Early-Stage Breast Cancer

Many of us who have lived through early stage breast cancer with lumpectomy surgery have also gone through radiation treatment.

If you’ve been there, you know the drill: 4-6 weeks of daily radiation sessions. Each one is relatively short, but there’s the time involved in getting there, changing into a gown, waiting for your turn, having the treatment, changing back into your clothes and getting back home (or work or wherever else you need to be).

And this happens every single day, five days a week, for weeks. You get to know your radiation therapists very well. And they get to see your breast over and over again. It goes on and on and on.

Closing the book on cancer treatment is a great feeling. And making radiation even shorter? Yes, please!

However, a recent clinical trial (described in the National Cancer Center’s Cancer Currents blog) examined the efficacy of a shorter 3-week session and found that the results (i.e., chances of cancer recurrence and serious side effects) were comparable to the longer, standard treatment.

Women who have an elevated risk of having the cancer recur at the tumor site are usually given an additional “boost” of radiation to that area. This takes place after the initial weeks of radiation, extending the length of treatment. However, researchers discovered that this boost could be given concurrently, thereby shortening the number of weeks that patients had to undergo radiation without compromising its effectiveness.

From the perspective of a patient, this is very welcome news. Setting aside time every day of the week to make the trip to the cancer center for treatment only works if your other responsibilities are flexible. I was working part-time during this, had access to a car, could get to the cancer center quickly and could be done in time to pick up my kids without too much of a problem. My bosses were extremely understanding and gave me the latitude I needed to complete my treatment with a minimum of stress.

For many, however, this might not be the case. Being able to shorten the overall treatment time could be critical in helping patients finish all their sessions.

It is heartening to know that as cancer treatments evolve, they become much easier to incorporate into our everyday lives. I am hopeful that the changes that come about over the next 10 years will provide even more options for successful completion of treatment with a greater survival rate for all.

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REFERENCES

Reader-Friendly
Ben-Ari, E, Shorter Course of Radiation Is Effective, Safe for Some with Early-Stage Breast Cancer, Cancer Currents, November 30, 2022: https://www.cancer.gov/news-events/cancer-currents-blog/2022/early-breast-cancer-shorter-radiation-therapy

Note: the results of the referenced clinical trial were presented on Oct 24, 2022 at the American Society for Radiation Oncology (ASTRO) annual meeting in San Antonio, Texas with Frank Vicini, MD as the study leader. My expectation is that more information will be published and I will try to post it here once it is.

But First, Self-Compassion

If you don’t love yourself, you cannot love others. You will not be able to love others. If you have no compassion for yourself, you are not capable of developing compassion for others.

Dalai Lama

As we head deeper into the holiday season, it’s easy to get lost in the hustle of preparations, gift purchases and holiday parties. So often, a time that’s supposed to be “joyous”, “merry” and “bright” becomes dark and stressful as we face the high expectations that we hold for these remaining weeks of 2022.

It’s difficult to welcome the holidays with an open heart if we’re closed off to our own needs.

I think of self-compassion as a rope. If you’re standing at the edge of a lake and see someone in distress you can only throw a rope if you have enough coils on your end. If the rope you hold is too short, it won’t reach the person you’re trying to help. 

And so it is if you’re trying to show care for someone—how can you truly care for them if you don’t care for yourself? Will you even know what sincere care and compassion are?

Self-compassion: acceptance, kindness and the understanding that what you are experiencing is part of being human.

 But the bonus of self-compassion is that the rope you throw is magical — you never give it all away. The rope is endless. Compassion doesn’t hurt, and a compassionate heart opens you up to being more compassionate more easily.

Allowing yourself to have the “less-than-Hallmark” holiday spread, to admit that you’re not feeling particularly jolly, to acknowledge that you need a break from responsibilities…

Take some time to feel into where your tension lies. Stop and listen to yourself breathe. Accept your feelings without judgment. Say “no” to taking on extra responsibilities more often…and then help others in doing the same.

Be compassionate towards yourself and it will be easier to show compassion to everyone else.

How will I show compassion to myself today? By taking stock of what else I can reasonably get done…and therefore end this post right here.

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Ok, I know up there I said I was ending this self-compassion post…but before I go, consider the words of Kristin Neff, PhD, Associate Professor of Educational Psychology at the University of Texas and a research pioneer on the topic: “With self-compassion, we give ourselves the kindness and care we’d give to a good friend.”

Dr. Neff breaks self-compassion down into three elements:
1. Mindfulness
2. Self-Kindness
3. Connectedness or Common Humanity

Read more about her work at https://self-compassion.org/

“Scatterbrained”: Yeah, Chemo Brain is Real

After a few years of wondering what the heck is going on with my head, I joined a Memory and Attention Adaptation Training (MAAT) class generously provided by my cancer center (which I’ll be posting about on a later date).

This is gratifying on two levels: first, that I can learn new strategies for dealing with the memory issues and distractibility that have been plaguing me since finishing breast cancer treatment five years ago; and second, and perhaps more important to me emotionally, that what I am experiencing is REAL. It’s officially termed Chemotherapy Related Cognitive Impairment (CRCI) or, informally, chemo brain.

I’ve been told that “you’re imagining this” (I’m not) or “you’ve always been like this” (I haven’t) or “just focus harder” (I AM!!!) or even “this is just an excuse” (Argh! No!), coming from people who have been annoyed by my memory lapses.

Chemo brain spends a lot of time just wandering around without an idea of how to get anywhere.

My brain isn’t lazy. As a matter of fact, it’s the opposite problem. My brain is too busy.

In the MAAT class, we learned of a study from the University of British Columbia (UBC) by Kam et al. (2016, Clin Neurophysiol) that examined what happens inside those brains that suffer cognitive impairment from cancer treatment, even years later. In that published study, the experimental group consisted of nineteen breast cancer survivors. All had undergone chemotherapy for early stage breast cancer and had subsequently self-reported cognitive issues.

Researchers at UBC compared these survivors against twelve (non-cancer) control subjects in a task that required sustained attention. All the participants’ brains were monitored via electroencephalogram (EEG) both while working on the task and while at rest.

The results were vindicating for me and, I’m sure, for others experiencing this. Normal brains cycle through periods of focus and periods of “wandering”. However, as the UBC researchers stated in a summary of their results (published here): “We found that chemo brain is a chronically wandering brain, they’re essentially stuck in a shut out mode.”

This was true even when the breast cancer survivors thought that they were focusing. Furthermore, the survivors’ brains exhibited activity even when they were instructed to relax.

Great. We know that chemo brain is an undeniable fact for some cancer survivors and can last for years — in this study, up to three years. However, for me and some of the people in my MAAT class, it’s been five years and we’re still dealing with this, which is frustrating. What can be done about it?

When anxiety and chemo brain collide, you get a confused goat tangled up in a rope. That would be me.

It won’t come as a surprise — anxiety makes everything worse, and that holds true for chemo brain too. As mentioned above, I’ll discuss this in greater detail in a later post, but basically, a main focus of the MAAT class is learning to handle stressors in an effort to relieve anxiety.

So now that I know that what I’m experiencing is a real thing, a large part of combatting it is what I’m already trying to do — mindfulness, meditation, yoga and similar sensible self-care. And while it might seem aggravating that even with all that practice I’m still dealing with this, I’m actually bouyed by the fact that every bit of mindfulness helps. The reality is, I’ve made a monumental amount of progress from where I was when I started, five years ago.

And that keeps me going. Where would I be if I wasn’t trying?

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References:

Reader-friendly summary:
“‘Chemo brain’ is real, say UBC researchers”, UBC News, Apr 27, 2015, https://news.ubc.ca/2015/04/27/chemo-brain-is-real-say-ubc-researchers/

The published study:
Kam JWY, Brenner CA, Handy TC, Boyd LA, Liu-Ambrose T, Lim HJ, Hayden S, Campbell KL (2016) Sustained attention abnormalities in breast cancer survivors with cognitive deficits post chemotherapy: An electrophysiological study, Clinical Neurophysiology, 127, 369-378. https://doi.org/10.1016/j.clinph.2015.03.007
Please note that the above study is not available free online at this time. For a pdf free of charge, contact one of the authors (email address next to their name at link above) or your local university library. Due to copyright issues, I am unable to distribute the full document myself.

A Gentle Meditation for Finding Peace at Thanksgiving

For those of us in the United States, Thanksgiving presents an opportunity to gather with family and close friends and share a festive meal.

However, this holiday can become complicated in a time of polarized views. Coming on the heels of another political election, togetherness with those of strong opinions might be, to say the least, uncomfortable.

Put another way, the battles will be epic, the indigestion will be legendary.

So for everyone who is anticipating shifting restlessly in their seats this week, I wanted to offer you a short meditation.

Listen closely. On the surface you might not like what you hear, but there may be deeper messages that speak to the vulnerability of those who seem the most belligerent.

Listen. If you listen closely enough, you will hear the real reasons that your family members believe what they do, particularly if their views seem hurtful or unfair. It often has something to do with fear or an unfulfilled need and often comes from a place of vulnerability.

You will chose how to approach this. But I can assure you that arguments are pointless. There will be no “winner”. Just resentment and an even stronger resolve not to change their minds. Don’t plan on pulling a “zinger” that will convert everyone to your way of understanding. Not gonna happen.

Observe. Instead of reacting to statements that you feel are wrong, watch the body language of those around you – it will show you the state that they are in. Clenched fists, hunched shoulders, unsmiling faces, repetitive movements – all these belie discomfort. Are people enjoying their food or unhappily shoveling it down?

Take a step back to help you see what’s really going on. Everyone at the table has a three-dimensional life with their own desires, joys and sorrows. In the time of heightened emotions, it’s easy to forget that.

Smile and find something that everyone can agree on.

Breathe. Don’t get sucked in. If someone asks you what you think about a contentious topic, smile and compliment Aunt Gladys’ stuffing. How does she always make it so flavorful? You woke this morning salivating, thinking about having it for dinner.

It may sound contrived, but if you can find a sincere compliment to express, you can change the direction of the conversation and relieve tension. But please, be sincere.

This is not a dishonest deflection of attention. This is finding that one thing that everyone can agree on and focusing on it. It’s like lighting a spark and then blowing on it gently to help it grow into a warm and cozy fire. Everyone benefits.

This is mindfulness at its best. Every person has something within them that wants to be loved and respected, even if they don’t feel they deserve it. Sometimes those who seem the most cantankerous feel the most wretched inside. Remember, at the end of the visit, you will get to leave, so why not leave having spread a little joy and goodwill?

At the least, you will have made Aunt Gladys smile.

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There is a lot going on in the world that is worth fighting for. Thanksgiving dinner is not the place to do that. And perhaps the peace that you impart over that meal will eventually soften hearts and open minds.