Not my first choice

With a stage 4 cancer diagnosis, you get access to lots of services, especially if you have children. Everything from stuffed animals to a backpack of entertaining and educational materials to trips to making a video. I try to accept none of those. I can barely accept that I have a cancer diagnosis.

However, at one point, all events pointed to me doing a video with my family. I’m not generally an anxious person, but this activity leaves me fraught with anxiety.

What would we talk about? Will I cry in a way that renders it unusable? If I don’t cry, will I hold back so much that I risk being inauthentic? Will I get to say what needs to be said? What will I wear?

Even more, I worry about how the kids will handle it. They already carry an underlying worry about me, and they ask questions like, “When will Mommy die?” or “Do you have the energy to hug me?” Will this be horrible for them? How will I explain it to them?

Lately, to relax, I spend late nights watching comedy routines online. Jimmy Fallon is a current favorite, and Louis CK is a go-to as well. He can be a little off-color and not politically correct, but his humor does get me to see my life differently and more easily face some hard truths about myself.

Plus he makes me laugh.

Recently, I was struck by a part of his routine that goes something like this:

“We get completely annoyed when we don’t get exactly what we want. You are at a red light” (I am picturing a street in Manhattan) “and you see the guy in the far right lane, four lanes over from the left lane. And he wants to make a left turn. At that street. So he cuts to the left, in front of the three lanes of traffic, effectively blocking them until he can make his left turn.

“The whole time, he is giving this apologetic face, like, ‘Sorry, but this is my left. I need to turn left here.’

“Why can’t he just drive two blocks ahead and turn left there? It might not be ideal, it might not be his first choice, but it will get him there.

“ ‘But this is the way I like to go!’ he might respond. ‘The other way is just so inconvenient for me. And this is the way I always go.’”

Another story: Like many people, I have my favorite priest for Mass. And when I get there and notice that he isn’t, I brace myself for a less-than-familiar experience.

But at this Mass, when the unfamiliar priest spoke, I heard a familiar, Midwestern accent. And his way of speaking reminded me how much I love the inclusive nature of my experience of Midwesterners. I instantly transported to my happy place, despite not getting my first choice.

Dealing with this cancer diagnosis, in just about every way, is not my first choice. Like the driver, I tried to force my way down a life road that was more familiar but I couldn’t easily or directly reach, but I feel like I am finding another way to get there.

And like getting the guest priest at Mass, this route seems to be okay. When I stop and look around, at least today, this moment, I am feeling good. I can breathe and walk and think and laugh. And I can love.

And maybe, just maybe, despite being far from my first choice, this video on Saturday will work out alright after all.

The greatest of these….

We live in the Boston area, so when I considered hospitals for chemotherapy, I looked at Dana Farber. At the time, everyone was squeezed into Dana Farber’s old building. Though the staff was unbelievable kind, patients were crowded into small waiting rooms.

I saw many tired faces. I noticed people with walkers and in wheelchairs. I saw people who clearly depended on others. I didn’t notice much conversation and people seemed to be each in their own world, reading a magazine or zoning out.

Scanning the faces, I worried that that would be me. Would I become resigned? Tired? Yellow? Would I become dependent? Would I have anything to offer the world?

Soon I was called for my appointment and my husband, our friend and I met with the oncologist, then left the building. As we waited for our car, I saw an older woman on oxygen, slumped in a wheelchair while she waited for her ride to pick her up.

That was the final straw. I freaked out and decided to get my treatment at a more general hospital, where I could feel like one of many kinds of patients.

Eventually, for my own reasons, I switched my treatment to Dana Farber. Since my first visit, they built a second building, so it is less crowded (though it is getting more and more crowded and harder to find a seat).

This time around, I still see many tired faces, but I feel more compassion and I notice the patients who are upbeat. Those in walkers and in wheelchairs make their way and even make the effort to consider the needs of others. One woman actually moved from her much-needed wheelchair to a chair because the wheelchair was blocking in the aisle and she wanted to accommodate others.

I am generally less wrapped up in my own fear and panic so notice more of the conversation among folks. I hear the husband remind his wife about the lovely things she told their children that morning, his tone reassuring her that she is showing them her love. I hear the couples who nervously bicker while waiting for an appointment and can feel the long-time affection in their voices. I can feel the love from the son who is ferrying his mother and holding her hand.

It continues to be difficult for me to see the patients on oxygen and in wheelchairs, but now they look more like people to me and a little less like my fear of the future.

No matter how ill they are, I assumed that each of these people must be offering something, because their companions clearly didn’t want to let go of the person they love.

I am honored to bear witness to all this. And recently I noticed that, when everything else is stripped away – our potential to be useful; our ego and the façade we create for the world; our quick minds; our ability to have a coherent conversation; our memories; our personal fashion sense; our ability to walk, stand, and breathe unaided – when these and even hope are stripped away, what remains, and comes through loud and clear, is love.

All about me. Or not.

My life tends to be all about me. My comfort. My health. My happiness. The happiness of people I love. My blog. Me me me. It feels good to step outside myself, but sometimes it is a conscious effort.

The other week, I attended a Mass led by an unfamiliar priest. I did know that he was a Jesuit so I assumed that he would at least have a good homily.

When we got to that point in the Mass, he started out by saying that he just got a call from a friend, who was at his mother’s bedside while she was dying. I looked at my sons, who never appear to be listening to these things but often ask relevant questions afterwards. They seemed to be unperturbed, so I listened while the priest continued on.

His talk was not a downer, though it covered a lot of death and specifically, death of a mother. He continued long enough that the man in front of me started visibly rolling his hand in a “wrap it up” signal, high enough for the priest to see, which made me laugh inside and a little out loud.

I learned a lot about St. Joseph being the patron saint of a good death, about the role of adult children as a parent is dying and the grace of God appearing at what can feel like the worst time in your life, but I didn’t get that soul-satifying feeling that happens when you connect with a talk. I suspect that everything in the world isn’t always a sign personally for me, though I seem to be surprised every time.

The priest eventually wrapped it up and the Mass continued on. At the end, my sons ran off to see if there were donuts today and I, knowing there were none, lagged behind. I walked past a friend who was still sitting in her pew. We said hello and she looked like she had lost her best friend.

“Are you okay?” I asked her.

“My mother died on Wednesday.”

I thought of that sermon. Crap. Was that awful for her? I hoped she was okay.

“The homily….” I started.

“That spoke right to my heart,” she said with a sense of relief. “Every word. It was exactly what I needed to hear right now. In fact, I took notes.”

It is so not always about me. Thank God.

Love,
Marie

The swirl and the puddles of life

Time passes with crazy, unbelievable events occurring all around me that often stun my heart. I don’t always feel calm, but if I can be still for a bit, I am lucky to find the calm center. The current calm I feel is not a peaceful calm, but more like a calm in the middle of the storm. I’m mostly watching and waiting – not sure for what.

Last weekend, a friend came to visit. She and I have been close for about 45 years (showing my age here!) and I love her through and through. We have experienced a lifetime of events together, such as our families moving during our childhood, our crazy teen years, romantic relationship stories, figuring out careers and how to live on our own. Our very different personalities gives each of us a different perspective on life. Among other traits, I admire her spirit and the swirl of activity that seems to surround her. I can talk with her about anything and her heart is generous enough to receive it in love, so we talked about how the swirl can be tiring for me at times, especially then, right after chemo.

On Monday, the last day of our visit, we were driving the kids to camp and a huge thunderstorm broke.

The rain was hard and fast, and we soon came upon a large puddle in the road.

I know the danger of these puddles. About 15 years ago, I drove my new Saab through a seemingly innocuous but deep puddle in the middle of a road. The water went into the air intake valve, causing the engine to seize. When my boyfriend (now husband) opened the door to get out and push the car, more water came rushing in. The car was totaled.

So on Monday, driving through the storm with my friend, I had flashbacks to that episode. I considered that this puddle might total my new car. I also considered that without my husband in the car, I myself might have to get out to figure out the situation and ruin my cute favorite sandals in the process. I considered waiting out the storm, but it didn’t look like it would end soon and I felt a need to get home. So we drove carefully in low visibility (holding our breath) through the large, deep puddle, and we exhaled when we made it through.

The rain continued and we were surprised to come to another deep puddle, then another. Each one looked harrowing, and after each one, we thought that would be the last and plowed ahead. We did this through countless puddles, each time navigating it carefully and then thinking we were in the clear.

My friend lives in California, which currently has a record drought. She marveled at how green and clean everything appeared, so I took a look around. Our slow driving enabled us to notice some of the beauty. For example, what we initially thought was a waterfall was actually someone’s front steps.

Waterfall steps

We were still navigating puddles when the rain stopped, so we took pictures.

Cars in the puddles

Once home, we briefly wondered what we would have done if we ran into trouble and laughed with relief that we didn’t have to worry about it. We learned that a tornado had been passing through a nearby town, causing the intense rainstorm. We were amused by the thought of surviving another crazy new adventure after so many years, and happy that neither of us had to get our shoes wet. When we heard about the damage to the town where the tornado touched down, being in the rainstorm didn’t seem so bad.

Sometimes, it seems like I am in the center of the storm when really, I am just experiencing the side effects. And, like a tornado, events move along, even if it is at a snail’s pace and only changing slowly.

I appreciate your company through the many storms that happen in life. At each deep puddle, when I think that this is it, we somehow make it through and assess where we are. I like to think each is the last one and we are then in the clear, but then another seems to come along and we take a deep breath and navigate that.

I’m so glad to survive these all with you, and I appreciate that you help me to see the beauty in them.  Thank you.

Much love,
Marie

This post is dedicated to my friend Kathleen, whose spirit went soaring this morning. Fly high my friend. Blessings to you.

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