I shouldn’t be writing this, but I am…

so please keep those positive thoughts and fervent prayers going! They truly do matter and make a difference.

Image: Gebet, Prayer, Kurt Stocker, Creative Commons License

My liver has been quite uncooperative of late. Actually, my oncologist now thinks the liver has been involved all along since my initial diagnosis included a large pleural effusion and ascites. The taxol and abraxane and Ibrance have just kept things in pretty good check. Fortunately, the ascites has not returned (knocking furiously on my noggin), but the pleural effusion has been a periodic and unwelcome visitor.

If you saw my last post, you will note that we’ve taken more aggressive action with a PleurX catheter and a change in chemo cocktails. The Abraxane was working beautifully until one day it just took a nasty turn in the wrong direction. It happened fast, too! I remember telling Dr. Mehta when we started Abraxane that it would either work well or it would annoy the cancer. The latter is the path the cancer took, so we started last month on Gemzar (gembicitine). This is a rather old chemo drug as such things go, and it has the potential for some nasty side effects, but it also has the potential to reverse this trend. So bring it on, Gemzar. Let’s sparkle and glitter like a pink unicorn and send these micro liver lesions and the accompanying inflammation into apoptosis!

It is a scary time for Rob and me because last Tuesday, based on my labs, Dr. Mehta was ready to have a very different conversation with us. Yet he admitted that my clinical presentation did not match my labs. My bilirubin is climbing–this week 16.5, but my alk phos levels are falling some. I don’t look as jaundiced as I should be, and I have enough energy to walk a mile or two (albeit slowly) and climb three flights of stairs. I’m not confused, and my appetite is improving. My symptoms of being a lovely shade of yellow and itching like a dog with fleas are manageable. It doesn’t make medical sense, but Dr. Mehta says he has seen this happen a couple of times before. So here’s to medical anomalies and miracles.

Image: A Bouquet of Prayers, Ajay Goel, Creative Commons License

Friends, the only thing to which I can attribute all this is my faith in the cosmic Christ, the one who holds every atom and molecule of the universe together, and who hears our fervent prayers. Sure medical science helps, and these tools have been given to us by God and healing hands raised up in divine power. Whether one identifies as Christian, a practitioner of any of the world’s religions, or someone who simply believes in the connectedness and sacredness of all creation, we are all on the same page when it comes to desiring wellness and wholeness for ourselves, for one another, and for creation.

So thank you! Thank you for your ongoing prayers, good intentions, and many kindnesses. They keep me going. They lift me up. The allow the glory of God to be shown through this process. Thank you.

I do have some specific prayer requests if you are able: 1) please add me to any and all prayers lists at your houses of worship; 2) I would seek specific prayers for the cancer to cooperate and exit my body; 3) that the divine will for my life will be realized; and 4) that although I am not afraid to die to this life, that I will be given more time to live, laugh, and love. Above all, I pray that Christ will be glorified in, by, and through whatever wholeness, healing, and life there is to come. Thank you! To God be all the glory. Amen.

Image: Prayers at Western Wall Temple Mount in Jerusalem, Asim Bharwani, Creative Commons License

Finally, friends, treasure each precious day of life you have. The present is all any of us is truly guaranteed. So live boldly, love lavishly, and make this world a better place for all people with all that you can.

You can’t always get what you want…

…but if you try sometimes, well, you might find you get what you need.

This snippet of lyrics from the Rolling Stones kept going through my head yesterday while I waited in pre-op at Upper Chesapeake Medical Center for my turn to go to the operating room. I was there to have the dreaded PleurX indwelling catheter installed. It wasn’t what I wanted at all, but it turned out to be exactly what I needed after all.

Image courtesy oncolink.com

Note: For those of you who are curious about a PleurX catheter and why it’s needed read on. If you’re not interested in detailed medical information skip down past the image and start reading again.

You may remember from past posts that my liver has been rather uncooperative for the last several months–since last summer when the cancer decided to take up residence there. Your liver is critical to your body’s overall functioning so this has not been good news at all. Since December I’ve had increasing bouts with pleural effusions. These collections of fluid gather in the pleura, a two-layered membrane that surrounds each lung to cushion and prevent friction as the lungs expand and contract. A small amount of pleural fluid resides between the layers to keep things moving well. Unfortunately, sometimes liver metastases can send extra fluid upward into the pleural space where it basically becomes trapped and pushes the lung upward. This in turn causes breathing problems and spreads cancerous cells. There are three solutions to the situation:

  1. Thoracentesis: I’ve had about half a dozen of these in two and a half years. It’s usually an outpatient procedure guided by ultrasound in which a surgeon inserts a needle into your back or side and uses a vacuum bottle to draw off the fluid. Theoretically, the lung will expand and all will be well. Sometimes, like with me, the fluid will return and eventually cause atelectasis (partial lung collapse). Relying on this procedure repeatedly puts one at risk for the fluid to collect in several discrete areas that makes drainage more difficult or impossible. Cancer is tricky.
  2. Pleuradesis: This is a permanent surgical solution that uses medicine, usually talc or doxycycline, to fuse the two layers together. This was what I had hoped to have, but my lung would not fully expand, so it was not an option. There are risks such as procedure failure, infection, etc., but then no medical treatment is without risk.
  3. PleurX catheter: This is a surgical procedure where the surgeon inserts an indwelling catheter into the pleura. The catheter hangs out of your body several inches, and you are able to work with a home health nurse or drain the catheter yourself using medical supplies and vacuum bottles delivered to your home. Eventually, the drainage should slow enough or stop completely, and the catheter is removed. My very excellent thoracic PA, Kevin, says that sometimes the pleura will even fuse on its own since the catheter is an irritant. I will do all I can to help that process by using my trusty spirometer.

No, it’s not what I wanted at all, but this morning my coloring was already better, and I have more energy. I have been able to eat more and move better; even stairs are easier. This is a good thing. Those who live with metastatic disease know that cancer can turn on a dime, and that disease progression is a reality that cannot be predicted. You learn to live in and for the moment. You begin to grasp the preciousness of each day. You treasure the texts, cards, small reminders of love and care, and some days you get a special lagniappe like I did when I arrived home from the hospital–a beautiful flower arrangement from our friends B and K. Thank you, friends, for making my day, my birthday, and my life so much brighter.

Whether you live with this precarious reality in your life, or whether your life is just peachy keen and dingle-dog-dandy, don’t take one breath for granted. The present moment is all any of us really have. Let us remind one another of that fact by not taking anyone for granted; love lavishly, serve generously, and give prodigally. The one with the most toys still dies but doesn’t get to take any of it along for the ride.

Yellow is NOT my best color…

Yellow was never my color–not even back in 1973. Here I am on the steps of the Parthenon in Nashville with my parents.

Let me just reiterate that statement…I do NOT look good in yellow. Right now I’m being compelled to “wear it” thanks to an explosion in my bilirubin counts that has left me jaundiced. It’s not a hot fashion look I assure you.

But things were going so well, weren’t they? Yes! Just a few short months ago a PET scan revealed encouraging changes and reduction in activity in my bone and liver mets. My tumor markers were going down, down, down, and all was looking super encouraging thanks to Abraxane.

One thing about metastatic breast cancer is that you never can count on one day being the same, or better, or even worse than the previous one. Cancer cells are smart, and they can learn to outwit the drugs that we throw at them. In fact, I remember telling my oncologist that Abraxane was either going to make a big difference, or it was going to make the cancer really mad. The latter is clearly the response.

About three weeks ago I started having trouble breathing again. Going up stairs required a major effort, and I was increasingly fatigued. The end result was a trip to the emergency room that resulted in a hospital stay, a pleural tap that removed 1.6 liters of fluid from my pleura complete with cancerous cells floating around in it. I did not improve significantly after a few days of rest at home, so I knew something was up (and it was probably going to be the tumor markers).

Sure enough, things took a 180 degree turn with my liver numbers and tumor markers. Why? Who knows? There’s so much we still don’t know about cancer. So what does this mean for me?

Image: Gemzar’s chemical makeup. Wikipedia

My oncologist at M.D. Anderson-Cooper is starting me on a new chemotherapy drug tomorrow in hopes that it will get those numbers headed in a better direction. So it’s bye-bye Abraxane, and hello Gemzar, aka Gemcitabine Hcl. It works somewhat differently from Abraxane and is classed as an antineoplastic, antimetabolite.

As I understand it (sure wish I’d been more attentive in chemistry), this drug is similar enough to a natural chemical to participate in a normal biochemical reaction in cells but different enough to interfere with the normal division and functions of cells. Evidently it’s pretty good at inserting itself into the work of quickly dividing cells, such as cancer cells, inhibiting their greedy metabolic process. I hope this little chemical trickster will do the trick for me.

It’s an old drug, patented in 1983 and approved by the FDA for medical use in 1995, that’s used in the treatment of many cancers, including metastatic breast cancer. Gemzar is also used off-label to treat certain cancers in the liver, so I’m hopeful that it will act accordingly for me. It does come with a slew of side effects, some of them quite serious, so I’ll have to watch and be watched closely. That said, I have come to appreciate the rather glib saying “Better living through chemistry,” so I’m willing to give it a 110% shot.

Additionally, next Wednesday I’ll have a PleurX catheter inserted to help drain the nasty fluid that’s preventing me from breathing well. It’s an outpatient surgery done under general anesthesia similar to that used for everyone’s favorite but completely necessary colonoscopy. I’m a little nervous about that, but it’s the best way to treat this problem. If I’m lucky it may even irritate my pleura enough to fuse it to my lung if my lung will completely reinflate with the negative pressure of the regular drainings.

Image: Pinterest, Creative Commons License

I remain optimistic about this cha-cha dance of life. Even when I take two steps back, there’s always the potential to step forward. And, hey, every day is gift. We all need to make the most of the days allotted us.

Please send all the prayers and positive energy you can spare my way. I truly believe that prayer is powerful medicine–better than any chemo without the nasty side effects. Life is beautiful, friends. Don’t take it for granted! Thank you so much for walking this journey with me. I hope and pray that we have many more miles to go.

In Praise of “Pond Scum”

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My morning “pond scum” ingredients. YUM!

Most of us living in North America fail the adequate nutrition test. In the land where Congress classed pizza as a vegetable (yes, really), it’s no wonder that getting enough servings of nutritious fruits and vegetables can be a challenge for the average American diner. I’ve always been a relatively healthy eater: I try to buy organic and local when I can, I’ve been mostly vegetarian for five+ years, and functionally vegan for almost three years. Cheese was my major fail in managing a completely vegan diet, but then we all have our challenges.

Enter a diagnosis of estrogen positive, stage IV breast cancer in September, 2018. Bye, bye cheese; hello full-on vegan diet! It was time to get 110% serious about nutrition. After all, diet appears to be partially responsible for some 30-40% of all cancers. More research is needed, but I’m with Hippocrates who knew the value of nutrition centuries before vegan was hip.

Let food be thy medicine and medicine be thy food.  — Hippocrates

My family and friends have become well acquainted with what I affectionately call my “pond scum” drinks. These green concoctions earned their name because, well, they LOOK like pond scum. The taste is actually a quite delicious combination of banana, apple, carrot, dark leafy greens (kale, Swiss chard, spinach are my favorites), blueberries, and filtered water, all whirled into a smoothie in my handy Ninja. The morning version includes a scoop of Greens First powder that delivers an extra 15+ servings of fruits, veggies, and antioxidents. Don’t knock it until you’ve tried it!

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Some of my favorite cookbooks. I also drink a LOT of herb tea in lovely mugs, like this Yogi brand DeTox tea.

I’m not suggesting that everyone choose a 100% vegan diet and forego caffeine, sugar, oils, and alcohol. This is my choice to give my body every chance possible to heal itself in combination with western allopathic medicine (i.e. chemotherapy). I’ve been influenced by the work of T. Colin Campbell, Ph.D.,John McDougall, M.D.Joel Fuhrman, M.D., and Forks over Knives. What I am suggesting is that you consider some diet changes before you are diagnosed with cancer, diabetes, heart disease, or other serious illness.

When diet is wrong, medicine is of no use. When diet is correct, medicine is of no need. — ancient Ayurvedic proverb

Sure, diet isn’t everything when it comes to health, but it is a major component. I’ll be citing the book Radical Remission frequently over the next few months because it’s had a huge impact on my approach to addressing my cancer. In this book, author and researcher Kelly Turner, Ph.D., explores nine key factors that cancer survivors share. Guess what? Radically altering your diet is one of those nine factors. In fact, it’s the very first factor Turner addresses. Your diet really does matter.

If you’re in great health, give thanks. If you feel that your health is slipping and you know that stress, lack of exercise, and a bad diet are markers of your lifestyle, take a deep breath and consider some changes–FAST. If you are dealing with cancer or another serious illness, consider how a healthier diet might be able to support your treatments. Do, however, include your care providers in discussions about nutrition and any supplements or complementary therapies you are considering. Above all, nurture your spiritual life and check out what your sacred texts have to say about food and nutrition. You might be surprised. In the meantime, I raise my glass of “pond scum” to your health–and to mine. Be blessed!

Disclaimer: I’m definitely not a health professional, but I’m in the business of learning all that I can to try to cajole my cancer into radical remission. If I can be of any help to you, great! Just know that what I write are my own opinions and reflect my own experience. When you find yourself living with a life-threatening illness or chronic condition, YOU are your best advocate. Learn all that you can, and don’t be afraid to ask questions or get additional professional opinions.

We.

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“No man is an iland, intire of it selfe; every man is a peece of the Continent, a part of the maine; if a clod bee washed away by the Sea, Europe is the lesse, as well as if a Promontorie were, as well as if a Mannor of thy friends or of thine owne were; any mans death diminishes me, because I am involved in Mankinde; And therefore never send to know for whom the bell tolls; It tolls for thee….”

— John Donne, from “Meditation 17: Devotions upon Emergent Occasions”

We are all beloved and beautiful. We are all broken. We do things and make decisions that cause hurt, pain, and suffering–for ourselves and for others. We also do things and make decisions that get it right and bring joy and hope to this crazy world in which we live. It’s a mixed bag, but one thing is for certain, we do not do this thing called life alone. Even when we try, we are never truly alone; biology, physics, psychology, and theology provide ample evidence of that.

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You. Me. I. We. All of us are a part of something bigger than ourselves. We even share air. Our matter does not go out of existence, simply changing form. The same sunset (I rarely get up early enough to see a sunrise) I watch is enjoyed by countless others–past, present, and I suspect, future. Whether you have deep faith in a creative and sustaining God, have serious doubts that such a God exists, or choose to believe that everything is random and pointless, you still are not alone. You are not an island.

Dearly beloved, own what is yours. Claim your stuff. Pick up your own baggage (and preferably work your way through it and come out the other side much lighter). Understand that you are responsible for your own decisions and actions, those that are good and those that are harmful. But, in the process, for heaven’s sake, don’t carry others’ baggage for them.

Do not accept blame for that which is not your doing. Do not accept the projection of someone else’s stuff and nonsense to become an image of your own. Do not be beaten down or manipulated by the abusive behaviors and rhetoric of those who would ask you to carry their burdens, accept their blame, and wallow in their muck and misery. This is not your work in life. This is not why you were created and gifted.

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Name that which is not yours to carry. Set it down. Leave it behind–gently, yet firmly. Be angry and hurt. That is part of being human; however, do not carry that bitter baggage for long. It will only poison you and give those who would abuse your good will power that is not earned or deserved. Lay it down. Put it to rest. Commend it to the dust of discarded memory and look to the path that lies ahead.

We are not islands. We are meant to thrive in connection and abundance and joy. We are designed for relationship–right relationship that does not pawn guilt or spawn dis-ease. We are called to co-create, not co-depend. Do not be trapped by those who would abuse you into believing otherwise. Do not believe the lies that are myriad and maddening.

Yes, all of us are broken. This is truth. But, my dearly beloved, I believe with all my heart that the arc of the universe does indeed bend toward justice (thank you, Dr. King) and that hope is the thing with feathers (thank you, Miss Dickinson) and that you and I, we, all of us, are meant to soar.

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So collect your broken pieces, beloved, sweep them up and treasure them. Examine their uniqueness and know they have purpose and place in this puzzle we call life. Put them back together like divine Kintsugi–with the gilt of goodness, the cement of courage, and the fire of beauty. You will be stronger in your broken pieces that reform to make a new whole.

There is such beauty in your brokenness restored. There is such hope for the world in your reclaimed flaws. There is such joy in the cosmos when you decide to be fully you. We are not islands, you and I; we are the stuff of stars and the entire cosmos hums within us. We are. Loved. Original. Beautiful. Broken. Yet Enough. Not because of anything we could say or do or even deserve. We are because the Creator of the spangled night sky and the tiniest ant spoke us into creative, connected existence. This is truth that hums and sings and weaves us together.

That’s us, my beloved. We.

 

Photo Credits: S. Blezard, Bill Cuffrey, June’s Child. Creative Commons License. Thank you.

Giving in Spite of…

Votive Candles

One of the things we so often hear about the church is that people today don’t need it. For a lot of folks what the church seems to offer just isn’t relevant.

Millennials are pretty clear about this. Recently I heard several young adults who fall into this age-descriptive category say things along these lines: “I don’t need the church to be a good person.” “Why should I go hang out in a building and sit, stand, kneel, sit stand, sit, stand” and sing songs that I hate?” “When I went, it seemed like people were just going through the motions.” “I can give and make a difference without doing it through an institution; in fact, I’d rather give directly to a cause.”

For those of us who are engaged in vocational church work, and for Christians who cherish their faith communities and traditional North American way of being Christ’s body, this can be pretty tough to hear. What we value, what we treasure, our traditions and rituals, and our ideas and images of the sacred, just don’t always cut it any more. Our wineskins (to use one of Jesus’ images) are getting pretty old and brittle.

Instead of becoming defensive and trying to shift the blame onto those outside of our circles, why not embrace the reality that a few things may have to give (or perhaps even more than a few!) in order for the body to get moving again? Christ is the same today as yesterday and tomorrow. The old, old ancient story is true. It’s just the packaging and the marketing that are looking raggedy and worn around the edges.

Christ will keep on loving and giving in spite of these facts. Christ will continue to pour himself out in word, in wine and bread, and in the faces of the hungry, the lost, ,and the marginalized. Christ will continue to be present. No matter what we choose to do or not do the gift goes on. This is very good news!

Now about change and relevance; well, we’ll save that for another day. Thanks be to God.

Simple Lent & Simple Food

If you live in North America, you live in the land of abundance. We have a staggering array of options when it comes to food. Just going to the grocery can be overwhelming if you shop at a store like Wegman’s (a store that was a guilty pleasure when I was on internship).

Maybe we have too much choice. Perhaps our choice has caused us to lose focus of the process of how our food is produced, processed, and marketed to us. Is it just to purchase a piece of fruit out of season that has traveled thousands of miles and burned a lot of carbon? Do we even remember how to eat seasonally, to put food by, or to support our local farmers and farm markets?

The shocking thing is that even in this land of  plenty, almost 49 million Americans struggle to put food on the table each day. The average SNAP (Supplemental Nutrition Assistance Program) allotment is $4 per day per person. In the United States alone, more than 16 million children live in homes where food is scarce. The situation globally is even more grim, and increasing hunger is likely to lead to violence as people fight over resources.

What can people of faith do? First of all, we can become more aware of the situation, especially in our own communities. You don’t have to look very far to find those who are hungry in your own home town. Secondly, we can examine our own patterns of consumption. How much do you spend on groceries each month? Have you ever broken it down by day and per person? You might be surprised. Now add the amount you spend dining out and on quick snacks and luscious lattes. It will be far more than $4 per day.

How might you simplify your consumption? How could you eat more responsibly and healthily? How can you find ways to work toward the elimination of hunger? For starters, check out the work of Bread for the World, for example, and become involved in being a part of the solution. Then find your local soup kitchen or food pantry and volunteer. Plant an extra row or two in your garden this year and give that produce to the hungry.

We decided during Lent we would simplify our diets as much as possible, increasing our consumption of legumes, avoiding processed foods, and continuing to support local farmers and economies. My spouse even gave up desserts for Lent. Tonight we dined on pinto beans, cornbread, and cabbage. It was a wonderful meal that cost only about a dollar each and was healthy and filling. We are also constantly aware of our waste stream and try not to waste food. Each year we are adding another raised bed or two, increasing the size of our garden.

Sure, these are small actions, but when we all take small steps good things happen. We have the capability to eliminate hunger in our world. To do so we must all be mindful of the choices we make and of how these choices reflect Jesus’ command to love our neighbors.

Here’s an idea! Instead of going out to eat, why not invite friends over for a shared meal. You provide the entree and beverages and invite your friends to bring a dish to share. You’ll have a good meal and an even better time. If you are adventurous consider a theme that puts an upper limit of how much can be spent on each dish. Keep it simple. Keep it real. Make it fun. Nobody said Lent had to be a completely grim experience.

Above all, pray for open eyes, open hands, and a heart that is willing always to share and set an extra place at the table. The Creator of the Universe deals in abundance. As the people of God we need to live from abundance, too.

Thanks-Living Activity

Be sure to check out this new film that premieres on March 1. You can find out more at bread.org.

Photos by David Shankbone and Natalie Maynor. Thanks!

On the Thin Edge of Health

With Lent has come a busier schedule both in my ministry and in teaching two online writing classes. Of course, to top it all off, both my dear spouse and I have found ourselves on the thin edge of health, fighting sinus infections that haven’t become full-blown but that are hanging on with annoying tenacity. Because of this lingering malaise, I did not post any entries last week, and I am sorry.

Good health is important, and Lent is a good time to think about health. Our bodies are made to sustain themselves when we eat well, drink plenty of water, exercise, and get sufficient rest. It’s the times when life becomes too hectic and we make compromises that dis-ease can set it. For me, a sinus infection is my body’s reminder that I am not taking care of myself, and I had better slow down.

I’ve kept exercising, albeit gently with yoga. I’ve indulged in a few much -needed naps, and I am eating simply and well. Hopefully, I’ll be back on solid health footing soon.

How about you? How are you tending to your health and wellness in the midst of wild weather swings, a glut of germs to share, and busy lives?

Photo by Hamron. Thanks!

Laugh! It’s Good for You.

Mirth is God’s medicine. Everybody ought to bathe in it. ~Henry Ward Beecher

(Note: This is the second installment in a series about how to really live life and live it well.)

Want to really live life? If you do, then make sure you laugh on a daily basis. Not only will you feel better and experience life as more positive, you may actually help your health.

A study at the University of Maryland Medical Center, led by Dr. Michael Miller, studied the humor responses of 300 subjects and found that indeed, there may be a real connection between frequent laughter and reduced risk of heart attack. Click here to read more about the study. Miller and his colleagues suggest looking at incorporating laughter into one’s life in the same way one would include a healthy diet and exercise.

What soap is to the body, laughter is to the soul. ~Yiddish Proverb

How about combining exercise and laughter into one healthy activity? Check out laughter yoga as a possibility. This practice combines unconditional laughter with yogic breathing (pranayama). It was the brainchild of an Indian physician, Dr. Madan Kataria and has grown to more than 8.000 laughter clubs in 65 countries. Click here and here for more information. Laughter yoga combines exercise, breathing, joy, and community into one healthy and affirming activity. According to the American School of Laughter Yoga, not only will practitioners see health benefits, but work productivity may increase by up to 31% Clearly, research shows we need to infuse our schools, our workplaces, our homes, and our faith communities with more laughter and joy.

Seven days without laughter makes one weak. ~Mort Walker

The photo above is a close-up of the artist Yue Minjun’s wonderful installation “Amazing Laughter” in Vancouver, British Columbia. You can read more about the artist and the sculpture here. Seeing these laughing figures, all of whom bear the artist’s face, makes one want to smile–or laugh. Look for art, for music, for theatre, film, and television that make you laugh, and incorporate some healthy laughter into every day of your life. Commit to trying it for at least 40 days, and keep a record of your progress and experience. I am certain you’ll find yourself stronger, more centered, and possessing a much more positive outlook on life. Go ahead…try it! What do you have to lose?

Now just why did the chicken cross the road? Maybe it was to listen to some fowl jokes.

Photos by Jeff Halllululemonathletica, and Matthew Grapengieser. Thanks!

Thankful for Heat

It’s cold here in Pennsylvania, a damp mid-winter cold. Of course, it’s January and it should be cold. That said, I am fighting off a cold (and losing) and am chilled to the bone. Brrrr! Five degrees above zero this morning might as well have been thirty below. Even the dogs don’t want to stay outside any longer than necessary.

That makes me especially thankful for heat–for a warm home and a warm wool coat to wear outside. I’m also thankful our car heaters work well. Every clang and clank of the radiator next to me sounds like music to my cold, tired ears.

What simple thing are you thankful for this day?

Photo by Geert Schneider. Thanks!