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 4^th 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.

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.

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.

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

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.

Though 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.

Us:

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.

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.

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