Banging against the screen

Thank you for all your prayers, positive thoughts, emails, cards, visits….everything is so helpful and even though I cannot always respond, the energy you send makes a huge difference. We all appreciate it.

Chemo last time around was….normal! Three days doing chemo in bed, followed by 2-3 days of recovery. In my abdomen, I’m feeling more tension than before, likely caused by the tumors pulling on various body parts, but my psyche is strong and my energy is rebounding.

Lately, it feels like chemo is the most consistent event in my life and everything else is structured around it. That doesn’t feel very good. For example, I close my eyes and I see rooms at Dana Farber. My frame of reference for many things I read or consider have to do with my chemo experience.

I don’t want that. I want my references in life to be more about family and friends and what is gong on in this world. In addition, I now live my life mostly inside my house (or at Dana Farber). I have slowly become a recluse. How did I get to this point? What can I do?

It is easy to say, “Just get out,” and at one point in my life, that is what I would have said. But that is way easier said than done. It has only recently been warm enough to go outside without a lot of preparation (which in itself wipes me out). But now it is warm enough to step outside without layers and with knowing that I can sit somewhere if I get tired. (I can’t do that when it is cold, rainy or snowy.) So I got used to being inside.

Now, when I do go out, it is usually to drive one of the boys somewhere, and then I make a beeline home. A simple errand, like going to Target or dropping off a package at UPS, is overwhelming. The thought of going someplace where I actually have to get ready in advance (like, going out to dinner or a party) exhausts me, because I know that just getting ready usually saps all my energy and then I have to cancel attending the actual event. I haven’t been to the grocery store (or any store) in months, as I worry about having enough energy to make it through. I haven’t been able to go to church in forever, and the last time I was there, I couldn’t sit through a full Mass. I didn’t like that this was my life and I didn’t know what to do.

However, I love that when you put a question out to the universe, you get an answer. I belong to a colorectal cancer survivor Facebook page, and someone mentioned they felt like a shut-in and posed the question of whether this is normal!

Responses flooded in. Normally extroverted people wrote that they could not, and didn’t want to, drag themselves out of the house. Many people actively avoid seeing others, and when do go out, they dread running into people. People stayed home because they are worried about their stamina, their comfort, and their need to be close to a bathroom. My experience isn’t unusual at all.

What to do? I don’t know. But the following sticks with me:

The other day, a bee was in our house, banging against a screen trying to get out. It tried several different places on the screen with the same result.

I couldn’t move the screen to let it out the window, but that window was next to a door. I could open the door to help it fly away.

But the bee wouldn’t be coaxed off the screen, much less toward the door. It repeatedly tried to break through the screen, bouncing back each time. I tried to shoo it and encourage it to fly just a little backwards so that it would find the open door to freedom, to no avail.

I need to do that myself. I need to take a step back and see if there is another option for how to “be” with this whole experience. If there is another option for getting through chemo so that my energy is better. If there is another option for the focus on chemo in my life. If there is another way to live my life when I am NOT attached to chemo or its after-effects.

In the meantime, we FINALLY have warm weather here in the Northeastern U.S. and I’m doing my best to sit outside when I can. I had a birthday recently and was truly amazed to make it another year. (Back in March and April, I wasn’t quite sure of that.) I love seeing friends. The kids are doing well and my husband is amazing. So focusing on all that.

I hope that you have a really wonderful holiday weekend, filled with anything and everything you love, and that if you feel like you are hitting the screen in any part of your life, know that there is an open door waiting for you.

Love and blessings,

Marie

Cowboy Up!

We had a fabulous family vacation at a dude ranch in Arizona.

Front of Ranch

Going into this vacation, I wasn’t sure what to expect. Our older son loves horses, but they only allow kids to ride if they are in the kids’ program, and group activities are not really his thing. Our younger son loves groups, but he broke his wrist and it would be in a cast. My husband has a lifelong fear of horses. And given my current physical state, I would not be able to ride. It didn’t look like a winner of a trip.

But I have learned to listen when I am guided to do something, so we set off.

The ranch offers a variety of activities. On a typical vacation, we do everything together, but here, there was so much going on that we also did things on our own. The counselors for the kids’ club were fabulous with our older son, and he took group riding lessons every single day. Our younger son LOVED the kids club; he attended every hour that it was open and talked about it when it was not. My husband rode daily and overcame his fear of horses. He also did a lot of mountain biking. And I was able to do a hike, some writing, and relax.

I also got to meet a blogger I follow, as well as her family. That was a fun surprise!

Karen and me

Toward the end of the week, we all attended a BBQ. It was outside, with fire pits, s’mores and a guitar player crooning country songs. (Obviously, we arrived early. It did get hopping after awhile.)

Ranch BBQ

The kids ran off to play together, with our younger son in the thick of things. I watched the group from afar, and suddenly, it looked like another kid was kicking him. Soon, our son and another boy ran over to me.

The other boy spoke breathlessly. “That kid keeps kicking Lefty, for no reason!” (Our son had picked up that nickname early in the week, and it stuck.)

The kicking kid slunk up behind them with a mischievous smile. I don’t typically discipline other people’s children, so I just said to the group, “No kicking. None of you.”

And they ran off.

A little while later, I glanced over at the kids. It was much darker and harder to see, but it looked like our son was getting kicked again. A lot. And he was.

By all accounts, that same kid just went crazy, kicking him for no reason anyone could give. We figured that the best bet was to separate the fight, remove ourselves (all of us) from the situation and head back to our room. The parents of the other kid were handling him; it sounded like this wasn’t the first time this had happened, and I felt for them.

Lefty had a bruise and cuts on his leg, scratches on his face, a cut lip, and a bruised ego.

The worst part, he noted, was that the two of them would be in kids’ club together the next day. He felt like he couldn’t go.

We assured him that we would figure something out, and we all went to bed.

The next morning, we told him that he didn’t have to go to kids’ club. Everyone had seen what happened and I’m sure we could figure out a way for him to ride the horses outside kids’ club.

But he loved the time playing with his other friends there. He didn’t want to give that up just because of this one kid and this one episode.

He thought about it over breakfast and decided that he wanted to attend the kids’ club after all, if his father and I could talk with one of the counselors.

Of course, we did. She had seen the altercation, so we simply reminded her of what happened the night before and asked if they could help to manage the dynamic. And though Lefty was still a little hesitant, he was also still determined not to miss a minute of fun, so he walked into the kids’ club with his favorite counselor and pushed through any discomfort.

He had a fabulous day. And by two days later, the boys were actually friends.

I hope to remember that when something is really hard. Do I want to give up the other things that I really enjoy in order to avoid what makes me uncomfortable? When I am in a lot of discomfort, do I want to give up on the fun things in life? Just like we talked with his favorite counselor, I may need some help laying the groundwork, but maybe from there, I could get going again?

On our next-to-last day, Lefty was riding a new horse, who bucked and threw him to the ground. He rapidly crawled away, determined that he was okay and got back on the horse.

This is unusual there – they don’t aim for the guests to get bucked. As a result, he got a strong reputation around the ranch as the kid who got bucked and got back on the horse. One of the cowboys loaned him chaps for his next ride, which made him feel like a real cowboy, and they gave him a lasso of his own to take home.

They signed his cast with what is now my new motto:

Cowboy Up cast

Cactus Flower

As you might expect, I think a lot about length of life, quality of life, and our unique (or maybe not-so-unique) life purpose.

On our recent desert vacation at a dude ranch, we saw this cactus flower in bloom.

Cactus Flower

Apparently, it blooms for just one day. But what a magnificent bloom.

I was rooting for it to open again on day 2, though very grateful that I got to see it when it did flower.

This, of course, makes me think about those of us who have thorny lives yet still bloom. And those among us whose bloom is far too brief, yet still beautiful, and how lucky we are to witness their bloom.

The skinny branches

Our second-story bedroom window looks out at a group of deciduous trees. (I’ll post a pic on-line at some point…)

Now that the leaves have fallen, I pass the time in bed by watching the squirrels run across the branches. The branches sway and the squirrel sometimes pauses. But I’m constantly awed at the ability of the squirrels to stay balanced on such skinny limbs, and the ability of the branches to stay strong and hold the squirrel.

This season, we’ve had many turkeys in our neighborhood. Up close, they are much larger than I imagined. From our kitchen window, I can see them nibbling on the kale and chard in our planter:

Turkeys eating kale and chard

The other day, I noticed a group of turkeys at our neighbor’s house and was amazed to see them walk across the top of on a fence.

IMG_1131

And then, I saw one nesting in a tree!

IMG_1138

Larger and heavier than a squirrel, I was even more in awe of their ability to balance, and of the tree’s ability to hold them.

I recently received the results of my CT scan, and was thrilled to hear that everything looks stable. I know that I am lucky to be alive this far out from my initial diagnosis, and at this time of year, I think back to the time I was initially diagnosed.

For me, the roughly 8 weeks between my diagnosis and start of chemo was unsettling (to say the least). It felt like I was facing a death sentence and unable to do anything about it.

During this time, though, one of my friends sent an article to me about a scientist named Stephen Jay Gould.

Stephen Jay Gould was a professor of zoology at Harvard University, and a specialist in the theory of evolution. In July 1982, at the age of 40, he was diagnosed with mesothelioma, a rare and incurable cancer, with a median survival time of eight months after diagnosis.

The distribution curve looks like this (adapted from the graph on page 12 of the excellent book Anticancer by David Servan-Schreiber):

This meant that half of the population diagnosed with mesothelioma died before eight months.

“But the other half, on the right, naturally spreads out beyond eight months, and the curve … always has a long tail that can extend to a considerable length of time.  … Stephen Jay Gould died twenty years later of another disease.”

He figured that someone’s got to be on that skinny end. It might as well be him.

I decided to adopt his mindset, and while I have wobbled on those skinny branches from time to time, I’m gratefully still here.

The squirrels and the turkeys remind me that although it might look crazy and impossible to balance on those skinny branches, they do it. They inspire me.

And it occurs to me, frequently, that you are helping to keep those branches strong, and to remind me that sometimes, they sway in the wind but it is all good. Thank you.

With love and gratitude,
Marie

 

Hiding in plain sight

Though I of course have a million stories about Costa Rica, I will wrap up this series with these three, which helped me to see even more of the beauty and totally fall in love with the people of Costa Rica.

The yellow bird

We ventured into the sweet nearby town, which consisted of two grocery stores and two bakeries – gotta wonder about that business model, but it seems to work for them.

Town on Osa

We checked out one of the grocery stores.

Grocery store in Osa

 

Grocery store in Osa

 

Produce in grocery store

Grocery store in Osa

After buying some treats, we headed back to our inn.

Dirt road into town in Osa

On the dirt road, we passed occasional hostels and small homes but didn’t see many people at all. At one point, the road split and my husband veered to one side while our son and I (our other son opted out of the walk) veered to the other.

Suddenly, a grandmotherly woman appeared on our left, pointing ahead of us and speaking in very fast, stage-whispered Spanish. I understood only that she wanted us to stop and be quiet. Once we did, she continued to share more information in an urgent tone.

“No habla Espanol,” I told her. Obviously, since that is the wrong conjugation, meaning “You don’t speak Spanish.”

She looked at me kindly, slowed her speech and used Spanish words that I was able to understand. She was trying to show us a beautiful yellow bird, giving us directions on where to look.

My son saw it first; it took me a little longer. But she patiently pointed and slowly described until I finally could see it too. As we watched the bird together, she exhaled deeply and smiled to herself in that deep contented way, clearly happy with it all – to her, sharing the beauty seemed to be as important as seeing the bird itself.

The blue-jeans frog

Gliding down the river in our raft, our guide suddenly looked up.

“Shhh,” he said urgently, and then steered the raft to the side of the river. He jumped out and ran barefoot into the brush, looking around for something.

Guide on side of river looking for blue-jeans frog

He was gone long enough that we stopped being quiet and started talking in whispers.

Then he ran back to the boat with his prize.

“I knew I heard it!” he exclaimed. “This is the blue-jeans frog.”

He held out a tiny frog for us to behold. Our son (who may watch way too much Discovery Channel but honestly knows so much about these things) knew that it was poisonous, but it was also beautiful.

Blue-jeans frog on river bank

Blue-jeans frog on finger

When we finished marveling at the frog, our guide ran off with it, returning it to its original hiding place. How humane.

I could not believe that he could identify the sound AND find that tiny thing in all the brambles. Not to mention that he did it all barefoot, all so we could enjoy it too.

The sloth

Our adventures included guided hikes, ziplines, Tarzan ropes, and rappelling. We walked over hanging bridges and paddled on a river raft ride. In each case, the guide would point out the wildlife and describe where we could see it. I often had trouble seeing wildlife when they were still, but it would catch my eye when it moved. For example, the shaking trees indicated where monkeys were swinging. Birds take flight in their bright colors. Lizards look like a branch then suddenly stand out when they run.

The sloth is an essentially sedentary animal who primarily lives in the trees. During the day, the two-toed sloth sleeps and the three-toed sloth moves slowly if at all. Even when the guide had his telescope fixed on one, I could not distinguish it from a termite nest. After trying a few times on a few different tours, I decided it wasn’t worth the effort of craning my neck or hogging time at the telescope.

On the last day of our trip, we took a river raft tour. Our guide pointed out a variety of lizards and birds, called to howler monkeys and capuchin monkeys and even spotted a coati / anteater, all of which I was thrilled to see.

But when he pointed to the sloth in a tree above us, I looked up politely, not even trying to find it.

He glanced at me and said, “You don’t see it, do you?”

“I don’t, but that’s okay. I always have trouble seeing sloths.”

We were next to the shore, so he reached out of the raft and grabbed some tree roots to turn the boat so I could look from a different angle. I still couldn’t see it. He moved us all a little downriver in case that helped. He pointed to the tree trunk and had me visually follow branches to find it. He described the location of each body part of the sloth so that maybe I could see it that way.

Each time, I looked but it didn’t stand out. I kept telling him that it was fine if I couldn’t make it out. I thought to myself that I wouldn’t see it unless it made a big move (highly unlikely) and that I don’t really care if I see a sloth.

But the guide didn’t give up and suddenly, I saw it! The sloth, clear as day, was eating and moving slowly along the branch. Though I didn’t think I cared, it was kind of cool to see it. I thought that the guide would be relieved, but he was only happy that I could share in the joy.

——-

In each of these cases, I appreciated that someone could see something that I could not. I loved that their pace of life allowed them to observe and relish the beauty.

I especially appreciated that someone took the time to patiently help me to see something special, something they saw but I could not, to differentiate it from the surroundings, to help me to see what was hiding in plain sight.

And once I saw, I could not un-see. What a gift.

Sometimes my life is like the rainforest. It feels beautiful all around, with hints of danger, looking slightly different as I move through it.

But then, there is more that I don’t see, that exists among the growth and the brambles.

Thank you for taking the time to help me to see the things that are so clear to you but perhaps not so clear to me, to differentiate the special from its surroundings, to see what is often right in front of me. Your sharing what you see expands my world, whether I am stuck inside my home or traveling to some new place.

I love how we can help each other to see from different angles, especially when we go at a pace that allows us to share and to listen.

I hope you feel content and happy with the beauty that you take the time to share. It generates good in the world, makes all our lives richer, and helps to make sure that we don’t walk right by the beauty in our days.

Love,
Marie

 

 

 

 

Something for everyone

Leaving the lovely, magical Aquila de Osa Inn on the Osa Peninsula for the Arenal Volcano involved taking a boat to a van, which would drive us to the local airport. From there, we would take a small plane to San Jose International Airport, where we would wait endlessly until we took another small plane to Arenal (or thereabouts), and then finally a van ride to our next lodging.

We said goodbye to the wonderful folks at the Aquila de Osa Inn as we and our massive luggage boarded a small boat at their dock. We quickly motored to a nearby inn to pick up another gentleman and his one small and probably efficiently packed bag. From there, our boat driver headed to the beach where we would meet our van and driver.

Leaving the Aguila de Osa InnIt was low tide, so our boat soon got stuck on the sand just below the water. The three guys in charge of the boat jumped out, stood around the boat until a wave flowed underneath it, then gave it a shove. As we were moving, they jumped in and motored forward, only to stop again a few feet later and repeat the whole process.

After several of these stops, my husband and the other gentleman got out of the boat with the crew and into the water, lightening the load and helping to push. The water came to just below their shorts until a wave came, making the water come to almost their hips.

Pushing the boat in Drake Bay

While the other man didn’t seem to mind, my husband was already grumpy after spending three days in a humid climate without air conditioning and with intermittent internet access. (Thank goodness there were no bugs!) Getting his clothing wet as we began our multi-hour travel day did not add to his experience of fun and adventure.

Once we reached the beach – well, we got near to the beach. To actually get to the beach, we got out of the boat and walked through the water to the shore. Yes, I did that! Thankfully, the water was warm and beautiful and I had worn flip flops. I have never done something like that or gone into water without wearing a swimsuit. I felt so….outdoorsy! This only added to my sense of fun.

It helped that the boat guys carried our luggage.

Unloading the luggage at the beach

The boat guys and my husband. I am eternally grateful.

Tiron with luggage at beach on Osa

Our next hotel had AC and fast internet access. Something for everyone on this vacation. Even if not always at the same time.

 

Keeping the magic alive

Our family just returned from a fabulous trip to Costa Rica, so the next few posts will be about our experiences there. We visited three areas: Manuel Antonio, the Osa Peninsula, and the Arenal Volcano. The first and especially the last are quite touristy; the Osa Peninsula is more remote.

Though I was worried that the Osa Peninsula would be too remote for my tastes, I quickly fell under its magical spell. To get to the intimate Aguila de Osa Inn, we boarded a small boat to travel down a river, through a mangrove swamp and into the Pacific Ocean. I’ve never arrived at a lodging via boat before!

On our way to Osa, through the mangrove swamp

Riding through the mangrove swamp

The manager greeted us on arrival.

Arriving at Aguila de Osa

After a brief orientation to the inn, Dixon the chef spoke with me to understand my diet and to tell me about his meal plans for me. I was stunned by the wall of fresh, organic produce in the kitchen.

Produce in the kitchen

For every meal, every single day, he thoroughly accommodated my vegan-no-sugar-no-acid diet by creating beautiful and delicious entrees. He even suggested a fancy cocktail made without alcohol or sugar, and made sure that the happy hour appetizers worked for me.

Happy hour

The visually peaceful surroundings include beautiful wood structures nestled in the rainforest, and it is all open-air.

The open air dining room and common space at Aquila de Osa

The open air dining room and common space at Aquila de Osa

You can barely see the structures from the water and even when you are on the property, you can only see small portions from any vantage point.

Each small structure has two to three rooms. The rooms have no closed windows, only screens, so you remain connected with nature even when you are inside. I felt the breeze on my skin at night, fell asleep to the sound of the ocean, listened to the rainfall in the middle of the night, and woke to the sounds of the birds.

Screens, no glass!

Screens, no glass!

Early every morning, one of my sons and I sat together on the deck to listen and watch the variety of birds as they woke; to catch the loud, deep call of the howler monkeys; and to see the colors of the sky at sunrise.

This place has a soul.

When the manager encouraged us to come to happy hour followed by a communal dinner, I cringed. I don’t like forced mingling. However, once we arrived, I got caught up in the positive vibration, as this unbelievable energy ran through the structures, the staff and the guests. It was like a thread connecting the best in us all.

I was thrilled to meet a fabulous and friendly guest who is a Hippocrates Health coach – the place where I got the diet that I follow! I wanted to attach myself to her.

Her husband radiated love and laughter. I felt calmer and more grounded just being near him, and I wanted to soak that all in. I later learned that he is a shaman, and he and his wife lead trips to Peru – something I have been thinking about doing for years. I could not believe I was getting to spend time with them!

As we shared stories about our travels through Costa Rica, I learned that they hadn’t planned to be at this inn, but suddenly felt that they needed to travel there for some unknown reason. They stayed for only two nights, and we got to snorkel together and have a picnic on a nearby island. It was like they dropped from the sky into my life, giving me some infusion of something intangible, something I could feel but didn’t even know I needed.

We met another family with kids around the same age as ours. My husband and I really liked the parents – we value the same things and live a similar lifestyle – so everyone played happily together.

Just when I thought that I had met more cool people than I could expect to meet in one place, another group joined us. Stephanie and her two male friends were smart and funny and easy to be with – my favorite kind of people! They got along with the kids and with us, and I couldn’t get enough of them.

The air was so fresh that I could take breaths clearer and deeper than I thought possible. I effortlessly climbed the hills and had more energy than I have in years. Our son did not need his inhaler. This was truly a healing, sacred place. When the chef came up with a fancy drink for me that had no alcohol or sugar, I felt like it couldn’t get better than this.

Though I was in my own version of paradise, my husband was miserable in the humidity. We had one more destination on our journey, so after three days, we left Aquila de Osa. From there, we moved to a hotel where two busloads of people arrived at the same time we did and the service was impersonal. It did make our family happy to have air conditioning, a fast internet connection, multiple swimming pools and a spa.

The culture shock made me feel amazed and in awe to have experienced the magic at all, and reminded me that it is up to me to keep that magic alive.

Thank you for being here with me. In gratitude, I send you bits of magic and hope it helps to keep alive the particular magic alive in your life. It is way more fun to keep the magic alive for each other.

Love,
Marie