Carrying a heavy load

A few years ago, on a lovely Spring day, my sister and I arrived at my grandfather’s house and found him sitting on his porch, which was filled with furniture that had been stored in the basement during the winter. Most of the furniture was relatively light, but one upholstered chair looked quite heavy.

“Who carried all this upstairs?” we asked him, expecting to hear that a neighbor helped.

“I did!” he replied with pride and joy.

We were shocked. My 90-something-year-old grandfather lived independently and was relatively hardy for his age. He cultivated a full vegetable and fruit garden in his backyard and he prepared his own meals. We did not, however, expect him to carry furniture up the narrow basement stairs to the front porch, and my immediate response was a combination of awe and concern.

“How did you get the chair upstairs?”

He looked at us with a smile and a twinkle in his eyes, but stated, as though it was the most obvious thing in the world, “One step at a time.”

The past two weeks in my life have been filled with suffering, dying and death. I won’t go through the entire list, but here is a sample:

  • Friends needed to return to treatment for cancer diagnoses
  • Others received new diagnoses.
  • A friend’s two dogs died.
  • My body was in pain, limiting my movement and activities

The heaviest part was learning of three deaths in less than one week. It was as if a big hole opened between heaven and earth and everyone was getting sucked into it.

Two of those who died were people I knew and loved. I was not related to them, and we did not have daily contact. But when they passed, I realized that they formed critical parts of the foundation on which I stood. Each of them supported and inspired me, most often by simply living their lives and letting me be part of it. I don’t know if either of them knew how important they were to me. I didn’t fully know, at least not consciously.

I attended the first memorial service, sad and stunned and honored to be invited.

A few days later, about to restart chemo, life looked grey. I am comfortable feeling sad, but I wanted to see the life in life as well. I knew that if I could have even a little, thin thread of light, I could follow that. But every time I looked for something light, I only found more death and suffering. One example: Flipping through the television channels, I got drawn into a movie  – which turned out to be based on Mitch Albom’s book Have a Little Faith, about his friendship with a dying rabbi.

I tried ways to “snap out of it.” I sat quietly. I tried to figure out whether there was some lesson for me in this. I asked God for help for me and for my friends. I focused on each moment. I tried to take care of myself. (Thankfully, my husband took total care of the boys.) I moved through my week.

Some good events occurred. I started chemo and miraculously didn’t vomit or even get nauseous. (You know you are digging deep when a good chemo session is the highlight!) We celebrated the boys’ birthdays (with me in bed – I was exhausted) and they had a good time despite my physical and emotional state. Mostly, I focused on getting through each day, as opposed to actually enjoying it.

I sent an email to friends about my sorry state of mind, and they responded. A compassionate word here, an insightful sentence there, a connection through stories….I felt myself being slowly lifted by their sentiments. Soon I could see a tiny little sparkle and I considered – perhaps it was part of a sparkly thread. A place where I could start.

As I let this light in, my physical problems got milder or disappeared altogether.

Some level of grace (and significant help from my husband) enveloped us and enabled me to attend the second memorial service on Sunday. There again, I felt sad but honored to be able to say goodbye to someone I was privileged to know and to be among people I have loved for all of my adult life.

That kind of love is buoying to me, especially in the face of sadness. Thank you for sharing your very kind words, your encouragement, your outlook on life, your divine light. It entered my heart and touched the divine spark that is within me and within us all. To move my life from grey to Technicolor, I could start there.

To move anything, even ourselves, it helps to take one step at a time.

With love and gratitude,
Marie

Moving through barriers

Our climbing guide, Dustin, drove us to Ice Cream Parlor, an area of rock in the Bureau of Land Mines near Canyonlands National Park in Utah. Another guide, Evan, soon arrived, and he and Dustin set up six ropes across the rockface we would climb.

While we waited, we heard loud voices from the road below and were soon joined by another guide, Mia, leading her group of two women, eight kids under the age of 12, and two men from Switzerland. I had hoped it would be just our family and had to adjust my attitude to include this large, energetic, noisy group.

Mia started training us and selected me as the demonstration belayer. Our older son jumped at the chance to be the demo climber. As we worked together, he climbed easily to the top. When we finished our demonstration, everyone divided themselves across the six ropes, with the Swiss men at the far end, away from all the kid commotion.

Our younger son, who we generally think of as the more athletic of the two, stepped up for me to belay him while he climbed. He made it about one-third of the way up.

“I’m done,” he said in a matter-of-fact tone.

That’s fine. I’m not as goal-oriented anymore and if that was how he enjoyed the climb, fine. But when he got down, he was clearly disappointed in himself. Maybe he assumed it was easy because his brother did it on the first try, or perhaps he just didn’t reach his personal goal. That’s okay – he could try again.

I continued to belay while other kids cycled through to take a turn on “my” rope. I noticed that kids have different ways of saying they are stuck. Some literally say they are stuck, some say they can’t do it, some ask for help for where to go next. Some face the logistical challenge of where to put their hand or foot while others are battling a mental or emotional barrier. With each child, I tried to read whether they were really done or simply needed encouragement. Since I wasn’t a mom they were used to, they were more open to my coaching (as if I know what I am doing) and most made it to the top or close enough.

My husband and I each tried climbing. He made it to the top several times, and I made it to the top on my climb.

Marie climbing Ice Cream Parlor in Moab, UT

Soon, our younger son was ready to try again, and again, he made it about one-third of the way up. Encouragement from me (“Just one more step”) moved him only a few inches and not beyond whatever barrier he faced.

“Let’s try another rope,” I suggested.

So we moved to another rope. Again, he made it one-third way. And again, my encouragement moved him only a few inches before he came back down.

As I kept belaying the next child in line, Xander, a six-year-old boy who was undaunted by the climbs, casually announced that he would do all six climbs and make it to the top of each one. And off he went.

Eventually, my son tried again. Having watched so many of the kids climb, and having done one climb myself, I knew that he was physically able to make it to the top. I also knew that he would be disappointed if he didn’t. But my encouragement wasn’t quite what he needed, and I didn’t know how to support him.

He was clinging to the rock, telling me he was done. I was getting tired of this dance, even though it wasn’t about me.

Luckily, our guide Mia appeared, and her chipper demeanor was a breath of fresh air.

“One more step. There is a perfect place for your right foot. Right there. Yes! Okay, now what will you do with your right hand?” she called out cheerfully.

Slowly, he worked through the spot where he was stuck until he got to another point where he got stuck and again, he said he was done.

J-man climbing Ice Cream Parlor in Moab, UT

This time, Xander appeared. He sat his tiny frame casually on a rock next to my feet, draping his arms over his knees, and yelled up at my son.

“You can do this. I did it. You can totally do it.”

My son climbed a couple more inches while Xander turned to me and said, in a matter-of-fact voice, “He can totally do this.”

Xander continued to sit and watch while my son yelled down, “I’m done.”

I knew reaching the top would make him feel better about himself and the day. I also knew that this one success would inspire him to try the other climbs and even help him through the hard parts on his own. So I yelled up, “If you make it to the top, you can have ice cream.”

He countered with, “And s’mores too?”

“S’mores too.”

Xander looked up at me, incredulous. “Really? You will let him have ice cream AND s’mores?” Like it was so much THE absolute best treat in the world that I had to be lying about it.

I loved this kid.

“YOU CAN DO THIS!” Xander hollered up the rock. “Ice cream AND s’mores. Do it!”

Inspired, our son proudly made it to the top. When he did, Xander told no one in particular, without a hint of jealousy, “Someone’s getting some good ice cream and s’mores. Awesome.”

The right support and encouragement can do wonders, even if I was initially resistant to the person being there. Everyone brings their own wonderful surprises, and they can make a day and a beautiful memory.

Thank you for encouraging me when I think that I can go no further, for believing that I can get past any barrier, and for being happy for the rewards that come afterwards.

Chemo resumes next week

Thank you for your prayers and your good wishes, your presence, your texts, your emails, your comments. I feel a bit like you are cheering me up Heartbreak Hill on the Boston Marathon route – it definitely keeps me going.

The good news is that everything we covered today with the oncologist was familiar territory. Yes, there is growth, but all in the areas where there was known tumor. Yes, I feel bloated, but they found no ascites (fluid that the tumors can generate) so it is likely due to tumor on my colon slowing down the works. And yes, I am short of breath, but that is probably due to my diaphragm being squeezed from all the crowding in that space, not because of new lung tumors as I had feared. And yes, my CEA (tumor marker in my blood) was higher, but it has been that high before and we got it back down.

In fact, it was hard to find the spots on my lungs, so that was good news. As for chemo, there was no room at the inn today or tomorrow, and I don’t want to have chemo Thursday – Saturday, so I will start next Tuesday. That is the physical side. The emotional and spiritual sides of me feel strong and happy. I poked into the dark and dusty corners of my mind and heart (places I usually don’t like to examine without a trained professional) to see if any scary thoughts or emotions were hiding there. But I really do feel good. My amazing cousin, her son and her fabulous friend were all visiting today and that makes me happy. Life overall is good. While I am not crazy about going back on chemo, I’m glad to have it as an option. The doctor made a remark about the gastrointestinal floor being the busiest one and how they are working to provide more space. I inferred that meant that they see a lot of GI cancers. So keep those intestines moving! Eat good foods, drink lots of water and keep your body moving. Get tested when you should and if you feel the need for a test and you can’t seem to get it, advocate for yourself or change doctors. You don’t want to be another one in this crowd!

I spent the past week preparing seemingly endless meals and snacks for the kids and their friends, delivering yet another glass of lemonade to a thirsty child, wiping sticky popsicle drips off the kitchen floor, telling the kids to go play outside, driving them to the pool, taking care of various animals. I wondered if I was frittering away my chemo holiday.

As I sat here today with the dog at my feet and my son on my lap, trying to write this post despite constant interruptions, I got this message.

The days go by with so many little things that don’t seem to matter
until they’re no longer there
and suddenly, they’re all that ever mattered.
-from StoryPeople by Brian Andreas

Enjoy the little things that make up your day. They matter. They are love and life.

Blessings and love always,
Marie

No Room at the Inn

As I sat in the Dana Farber waiting room on Friday, waiting for my CT scan, I felt calm and happy. Elated even. I also enjoyed being relatively clear-headed and feeling more like myself. Thankfully (or maybe because of that), the whole port access process and scan went more smoothly than ever.

Over the past few weeks, I’ve had intermittent pains in my abdomen and ribs, as well as pain in my shoulder and my left leg, all of which have become more frequent. I’ve had bleeding. It has been uncomfortable to stand for any length of time. I’ve had abdominal swelling and shortness of breath.

Because of this, I decided that, regardless of my scan results, I should go back on chemo.

I see the doctor tomorrow (Tuesday) morning to get the scan results so I called the office to see if they could set me up for chemo right afterwards.

The first available chemo opening is on Thursday.

Not even Wednesday. Thursday. Business is way too good.

Because my chemo is a three-day process, this means that chemo would stretch over the 4th of July. It also meant that I would henceforth be on a Thursday-Saturday schedule, interfering with my weeks and my weekends.

I declined and they will see if they have an opening for next Tuesday.

I do know that the right thing will happen. And while my faith feels strong, in these unknown parts I want to ask, “Okay, what’s the plan here?”

Thanks for your support and for coming along with me in these unknown waters. We’ll see where they take us, though I know it will all be good.

Love and blessings,
Marie

 

A day in the life

We are home from vacation and the kids started summer camp. This particular week, one child attends a camp in Cambridge and the other attends a camp in Newton. We live in Cambridge, and Newton is not far, but both camps are on the OPPOSITE end of the close side of town.

In addition, both camps start at 9 a.m.

I love logistical problems and this is how we solved this one.

7:40 a.m. Leave the house for an 8:00 drop-off for the Cambridge camp. We drive 20 minutes, park, then walk him to the building. Return to the car by 8:20.

8:20 a.m. Start the rush-hour, 50-minute drive to Newton. Drop off around 9:00 (sometimes 9:10).

9:00 a.m. Drive home, arriving around 9:40.

Basically, driving the kids to camp is a two-hour gig.

Their pick-ups are at 3:30 and 5:00, so I leave the house around 2:30 and make the loop in reverse, arriving home around 6 p.m.

I honestly don’t mind all the driving. It is only one week. Besides, it is what I am supposed to be doing. And I can do it! It feels like a dance.

However, even on my chemo holiday, health challenges interrupt my week. For example, on Monday, I had debilitating shoulder pain (that is now thankfully gone). And I have had a pain in my leg for the past three weeks, plus the pains in my abdomen. Though I am not fully functioning all the time, I can do a lot and try to maintain some degree of normalcy and routine for our kids.

My CT scan is scheduled for Friday and causes me to miss the end-of-camp shows. Bummer, but I think the kids will be okay. I called the hospital to ask them to scan my leg while they were scanning my chest, abs and pelvis.

“Come in immediately for an ultrasound. It might be a blood clot. I got you in for a 1:45 ultrasound. It will take 30 minutes, then the doctor will see you at 3:00. Be prepared to stay in case they find a blood clot.”

Life upended and I tried to stay calm. A 1:45 ultrasound works if they run on time. But three o’clock is right in the middle of my pick-up rounds. Plus, be prepared to stay? What does that mean for childcare when you have kids?

As I said, I love a good logistical challenge, but I couldn’t think straight and this threw me into a tailspin. I looked at the clock. It was almost noon. I didn’t have a lot of time to figure this out.

A friend in California offered suggestions via text messages, though I couldn’t see any solutions I liked. A few lucky friends happened to email me at the time and I complained to them. They offered to help but honestly, who can drop their plans at the last minute for a multi-hour, traffic-laden gig for kids who will be understandably upset about a sudden change and worried about their mom? I texted a neighbor to see if she could take at least one boy after camp, but there was still the pickup puzzle.

Eventually, I decided to scoop up the Newton camper on my way to the ultrasound (though it wasn’t exactly “on my way”) and take him with me. The au pair, who was out for the day, could be home in time to pick up the Cambridge camper at 5:00.

My son and I arrived 15 minutes late for the scan, and the folks at Dana Farber could not have been nicer. We were admitted right away, and the tech rubbed the gel on my leg.

As I lay on the table, my phone rang. It was the director of the Cambridge camp. Our son wasn’t feeling well and could we pick him up?

I thought I was calm, but I could again feel my life unravel as I called the au pair. No answer, so I left a message. Argh. Hopefully she was on the T (Boston subway), on her way home earlier than planned, but I didn’t know. As the tech slathered more gel on my leg and pressed down with the ultrasound probe, I took a deep breath and called another friend. Even though driving in Cambridge traffic is her own personal version of hell, she agreed to be on standby.

Just then, the au pair called. She had indeed been on the T when I rang, and was now almost home. She could pick up the Cambridge camper without delay.

The heavens opened, light appeared and angels sang.

About 10 minutes later, the tech told me that there was no blood clot.

And just like that, life returned to normal.

I would love to have no glitches in my life, especially no health glitches. I would love for the boys to have some consistency and to feel like they can rely on me, that I am there for them. I know that we are doing the best we can, and I am grateful to God for helping me through these moments, even when I forget to rely on that. Now, if I can just trust during that space between the moment when life turns upsidedown, and the moment it is righted again….

I hope that when you are in that blank space, between a problem arising and a solution arising, that you feel taken care of and can trust that it will all be okay.

Much love,
Marie

 

Living on the Edge

Taking a chemo holiday is a bit scary, with every abdominal twinge and pain making me wonder if this was a good idea.

But since I am indeed on a chemo holiday and the kids are out of school, we decided to take an actual holiday and travel to Moab, UT to visit Arches National Park and the surrounding area.

The massive red rocks, coupled with the fast-moving Colorado River, quickly changed our relationship to the earth.

Mesa and Colorado River behind Sorrel River Ranch in Moab, UT

Our city-slicker, technology-obsessed family became excited about doing anything outdoors: rafting on the river, rock climbing, horseback riding, hiking the rocky hills, picnicking in the National Parks, sitting and breathing the Utah air.

Riding horses

Hiking in Moab, UT

We became calmer, more grounded and less stressed out.

I felt blessed to be able participate in almost every activity. Since the early 1990’s, I dreamed of rafting and camping on the Colorado River. We only did the rafting part, but it nonetheless felt like a dream come true.

Rafting on the Colorado River

On another day, I was amazed to find myself actually climbing an OUTDOOR rock face, something I never thought I would experience!

Marie climbing Ice Cream Parlor

From city living, our family is accustomed to signs and fences letting us know where we can go for each activity. You walk on the path, not on the grass. You play in the backyard or playground, but not on private property. You climb at the climbing gym. Buildings are everywhere, limiting where you can toss a Frisbee, catch a ball or watch the sunrise. Fences keep us safely on the right side of danger.

However, in this area of Utah, the entire outdoors feels like a playground, with the rules set by nature rather than humans. We can walk or hike anywhere, while we respect and not trample delicate wildlife. We can ride the rapids but the water will toss our raft while we go with the flow and deal with the outcome. We can stand in one spot and turn around 360 degrees without seeing a manmade structure. We can peer into canyons without a fence to safely hold us.

Canyonlands National ParkThough the landscape is breathtaking, the freedom can be frightening. As we watched the boys run and play alongside the Colorado River, I tried to focus on their fun rather than obsess over the potentially precipitous drop into the water. However, when we visited Canyonlands National Park and its canyons, I held the kids tightly while we stood a safe distance from the edge and its steep drop.

Not us:

Not us.

Not us.

Us:

In Canyonlands National Park (Island in the Sky)

In Canyonlands National Park (Island in the Sky)

Notice my tense look and tight grip on the boys. From our vantage point, we probably missed a more encompassing view but I was not able to stomach the risk of standing on the edge.

On this chemo holiday, I am keenly aware of the contrast between staying safe and living on the edge. When I was initially diagnosed, over six years ago, I was told what to do – what surgery I needed, which drugs I would be taking, how much and for how long – and I followed those instructions. As time passed and I thankfully did better than expected, I sort of entered the Wild West of treatment, where I have more input and freedom around my treatment choices. I discuss chemotherapy dosage and schedule with my doctors. I decide what nausea meds to take. I get to choose when to take a break from treatments.

I have some really good guides to help me make my decisions. I try to remember that, even if this road does not feel well-worn, it has indeed been traveled before and is not fully unchartered territory.

Again, all this freedom can feel scary. When I feel pings and pinches and pains in my abdomen, I worry that I am stepping too close to the edge by taking this break.

But I am here. I remain conscious that a misstep can preclude a big drop and fatal fall, but I remind myself to concentrate on the view and how grateful I am to be part of it. And when I look closely, I can see that life blooms in many places, often where I least expect it.

Desert flower Cactus in bloom

Love, beauty and blessings,
Marie

 

All the world’s a stage

On Sunday, we attended Cirque du Soleil’s show, Amaluna. I loved the fabulous performance, and now that I am more aware of gymnastics, I noticed how they incorporated countless extreme gymnastics moves that take much skill and practice.

For example, in one part of the show, a performer (a man) stood on his hands. Okay, while I can’t do that myself, my seven-year-old can, so I wasn’t wowed. But THEN another performer (a woman) STOOD ON THE BOTTOMS OF HIS FEET. Can you picture that? His arms were holding up and balancing not just his body but also hers.

As if that weren’t enough, they then separated their legs to make an opening through which another cast member could and did flip. The whole crew made it look easy.

Later in the show, a group of men performed on a teeterboard. Picture something like a seesaw, with Grown Man 1 standing on one side. Grown Man 2 jumps onto the other side, sending Grown Man 1 flying and flipping into the air. Grown Man 1 lands back on the teeterboard, sending Grown Man 2 airborn to do the same thing. Soon, Grown Man 3 joins in the fun and their alternately flying bodies resemble a human juggling act.

Cirque du Soleil

photo from the program

Eventually, eight (or so) men were jumping on the teeterboard or into the air. I noticed that when they weren’t flying through the air, they were subtly spotting their fellow cast members who were. One time, one man landed with one foot on the teeterboard and one off, and the man near him put his hands on the first man’s hips as if part of the act, but this action steadied him enough to move his other foot onto the teeterboard without wobbling.

When the men finished their act, they bounded to the edge of the rounded stage to take a bow and take in all the applause. While they stood there beaming, I looked at the performer on the stage in front of us, who happened to be the spotter who helped out. While we applauded, he quickly made the sign of the cross, kissed his fingertips, then raised his fingers and his gaze up to God in a motion of gratitude.

That stuck with me. He was doing what he clearly loved, recognized the risk, and showed his gratitude for a beautiful outcome.

Life can feel a bit like Cirque du Soleil – beautiful, sometimes crazy, sometimes risky. We move individually and together, with so much going on all around.

Maybe we don’t have acrobats flying through our legs, but we certainly hold our own weight and carry others when we can. We spot and support each other to keep our balance and get back on our mark, and together we create an amazing, breathtaking performance. I am grateful to be part of it all, and I give thanks to God for that.

I give thanks also to you for spotting me, supporting me, helping to keep me balanced and get back on my mark, and helping us all to look so good together.

Enjoy your performance today, and that of those around you!

Love,
Marie