The Journey

I was lucky enough to lector at Mass today, and one of the readings was 1 Kings 19:4-8. In preparation, I read the passage several times during the prior days.

Essentially, Elijah is DONE. He wants to simply die in his sleep and be done with it all. But an angel wakes him and tells him to get up and eat. Elijah eats but then goes back to sleep.

So the angel wakes him again and tells him to eat more, because otherwise the journey will be too long.

First of all, I love that the angel prods until he or she gets heard. I’m hoping that means I will get several chances to hear any important messages. And second, telling Elijah that he has a long journey ahead feels optimistic, implying that he still has a lot to do.

But the giving up – I can relate. During my chemo days, I’m just done. I lay in bed and often I feel that if I died in my sleep, things would be so much easier.

But then chemo ends, and I get up. Sometimes I need and appreciate a little extra prodding. Most often, I shower and eat and drink, and when I do, it helps me to keep going. Well, that and a bit of social interaction. The social interaction really feeds me. I try to take one day at a time and, often, the following days are pretty darn good.

I am incredibly grateful to still be here. This morning in church, I also read the names of two people in our parish who died this past week. One name stayed with me and soon after, I learned that she was about to be a senior in high school and died of cancer. No matter how many times and ways I hear news like that, it is sobering.

Hopefully my journey is long, though I don’t want it to feel long in a horrible way. I want it to be long in a good way. But it will be whatever it will be. As long as I am here, I guess my job is not done.

Next stop on the trail: I have a CT scan tomorrow. I typically don’t have a lot of anxiety around my scans, but I do have anxiety around getting poked. They “access” the port in my chest, which means they stick a needle in it so they can do an IV contrast. This is infinitely better than getting stuck in my arm or hand. Actually, I have only one good vein left, and it is in my left hand, so I am endlessly grateful for this port.

Still, I hate getting stuck and this week, I will get stuck on Monday for the scan, and again on Tuesday for the blood draws and infusion. I am taking lots of deep breaths.

Thank you for being along on this journey. Thank you for your prayers and good thoughts. And thank you for staying nourished, so we can all walk together and even socialize along the way. May your journey be long. And fun! Thank you for including me.

Love,
Marie

How to best spend time?

Thank you so very much for your prayers and positive thoughts. This round, I had an amazing string of days where I felt good and my energy was great.

When I was, years ago, first told that this was “stage 4,” I thought a lot about how to spend my time. Did I have a purpose in life that I needed to fulfill? What was the best way to spend my time? While I still don’t have an answer, I do notice and appreciate when I am able to do things that bring me joy.

Here is an example of something that I had energy for, that you enabled, and that brought me an insane amount of joy:

On Sunday morning I felt great. So I drove to church, parked, then bounded through the cold rain and up the steps to enter the building.

Just ahead of me was an older couple. He stood on the top step in front of the heavy wooden doors, tentatively reaching for the handle as he leaned on his cane. Behind him, she held tightly to the railing to steady herself as she climbed the last of the wet steps.

She saw me, but I didn’t want to startle him by rushing past, so just before I reached him, I warned him by saying, “I’ll open that for you.”

He slowly looked over at me and said, “Thank you.” The three of us walked inside together, then I headed a different direction to find a seat.

During communion, I saw them walking together. He wasn’t using his cane but grabbed and leaned into each pew as he went by.

And then, when I left, I saw them AGAIN. We were alone by the doors to exit and we spoke for a bit. They introduced themselves with their lovely Irish accents and told me that he has trouble getting around, but they don’t have a diagnosis yet.

“It’s hard getting old,” they joked.

Once outside, we noticed that the rain had turned to a wintry mix and the walk to the car was potentially slippery. So I walked alongside them until we reached their car, now covered in slushy mess.

“Let me clean the windows for you,” I said.

“Thank you,” she said appreciatively. “I will give you something to help.” They got into their car, then she handed me a bundle of tissues from her purse.

“I’ll be right back,” I told her, as if they were going to run off. And then, I was able to zip to my car, get my snow brush, and return to their car to clean the windows.

This whole event amazes and thrills me in so many ways. That I could NOT be preoccupied with pain, nausea, discomfort, etc. and be able to notice people around me. That I could notice what they might need. And that I could actually have the energy to help. I loved all that. And I appreciated they were gracious receivers, because that allowed me to have this whole experience.

I still have no idea of my grand purpose in life. But that experience was so incredibly fun, I’m hoping that is part of it all.

I hope that you can step into an opportunity that brings you joy, today and always. Thank you for all you do that enables me to spend my time this way.

Love,
Marie

What is reality?

Thank you for your prayers and good wishes. I had chemo last week, Tuesday through Thursday, with no vomiting during my at-home time. Woo hoo. To top it off, usually Friday is a recovery day, but this time around, I was able to walk and pick up my son from school. I attribute that to your prayers and positive energy around no side effects.

Last week also carried a Joni Mitchell theme, specifically her song Both Sides Now. Friends on Facebook would post pictures of clouds – storm clouds overhead, clouds during a sunset, clouds below their airplane. Each time, the lyrics, “I’ve looked at clouds from both sides now….”  popped into my head. Then a friend posted those specific lyrics. Another posted a picture of himself with Joni Mitchell.

In the meantime, chemo was done and I was feeling better. I reflected upon some point years ago, right after my diagnosis, when I was struggling to process all that was happening. At that time I thought, “What is the difference between the day before I got my diagnosis and the day I got it?” My body felt the same. The primary change was that someone else told me something they thought about my body.

Their words influenced my reality. They shifted how I thought and felt about myself and my life. So, I worked to form my own version of reality, and when I am feeling good, I like to think and act as though I don’t have cancer, and that makes me happy.

But then, sometimes, a different side comes roaring in: A friend sharing her experience on hospice, another experiencing a scary phase, a third who passed away. I felt deeply honored that they let me into their very personal experiences, yet my heart broke each time. I didn’t know how to handle all this, how to be a friend without layering my own concerns for them on top of it all.

You do that all time for me, and my gratitude expanded.

It is winter here, grey and cold. Driving to church on Sunday, the boys started to talk with each other about death and heaven. They discussed whether there is a point before you are really dead where you get to decide whether or not to die, who you might see there, what it would feel like. They seemed to have a pretty comfortable handle on the afterlife, and I was glad they were having this discussion. But it also reminded me that our family needs to have discussions like that, and I felt more and more of the darkness.

Once in church, the topic was about Jesus being a light in the darkness. When in the dark, look for the light. If opening my heart to my friends can have me feel heartbreak, it can also let in the light.

The day felt better now. Looking at it from a different side helped. Which is reality? I don’t know, but I like to think that it all is, regardless of the side we see.

Both Sides Now
Joni Mitchell

Bows and flows of angel hair
And ice cream castles in the air
And feather canyons everywhere
I’ve looked at clouds that way

But now they only block the sun
They rain and snow on everyone
So many things I would have done
But clouds got in my way 

I’ve looked at clouds from both sides now
From up and down, and still somehow
It’s cloud illusions I recall
I really don’t know clouds at all 

Moons and Junes and Ferris wheels
The dizzy dancing way you feel
As every fairy tale comes real
I’ve looked at love that way 

But now it’s just another show
You leave ’em laughing when you go
And if you care, don’t let them know
Don’t give yourself away

I’ve looked at love from both sides now
From give and take, and still somehow
It’s love’s illusions I recall
I really don’t know love at all 

Tears and fears and feeling proud
To say “I love you” right out loud
Dreams and schemes and circus crowds
I’ve looked at life that way 

Oh but now old friends are acting strange
They shake their heads, they say I’ve changed
Well something’s lost but something’s gained
In living every day

I’ve looked at life from both sides now
From win and lose and still somehow
It’s life’s illusions I recall
I really don’t know life at all 

I’ve looked at life from both sides now
From up and down and still somehow
It’s life’s illusions I recall
I really don’t know life at all

Do you see what I see?

It has been fabulous to have an extra week away from chemo. I feel like my mind has some space to clear away the fuzziness I can get from the drugs.

Coincidentally, I’ve been talking with quite a few people about the anti-nausea drugs that I take and don’t take. One of them turns me into a different person. When I take it, I know that I am not thinking the way I usually do or acting the way I want to act, but I can’t help it. If someone were to tell me that I am being irrational, or that what I see isn’t really true, I become even more irritated, angry or sad, but it doesn’t change my view of reality. I can’t “snap out of it” or use logic. I just am where I am at that time.

That experience has helped me to see how thin the line can be that divides the way we each see the details of life and the feelings that drive our behaviors. It has also helped me to understand that maybe others cannot help what they are doing or saying, and maybe that it all makes sense in their version of reality. I hope it makes me more patient, though I suspect not as much as I would like to believe.

Regardless, I’m always glad when I don’t have to take that drug – I like the version of reality to which I have become accustomed.

In this version, I felt lucky to go to Mass at my parents’ church on Christmas morning with my family, my sister and niece and my parents, taking up an entire pew. Looking around, I noticed a woman in the pew to the left of us holding a baby girl who appeared to be sleeping. The woman was of the age where she could have been either an older mother or a younger grandmother. The baby’s head rested on the woman’s shoulder, on the other side of my view, but her arms lay limp at her sides in such a way that I assumed she had problems with her muscle tone.

I didn’t watch them much after that, though the woman caught my eye when she left the pew and headed to the back of the church, carefully carrying the baby and a diaper bag.

She returned a few minutes later, sat down, then held the baby face-to-face, nuzzling noses. I tried not to stare but noticed the baby’s perfect face.

Turning to my seven-year-old son, I told him, “Look at that perfect little baby. She looks like a doll.”

“She IS a doll,” he hissed at me, indignant at being in church at all and now annoyed to be with a mother so daft as to believe that could be a real baby.

I squinted to study the pair. Yes, it was a doll. But the woman was clearly interacting with the doll as though she were a baby, supporting her head as she held her, and making loving faces at her. She even glowed with the happiness of having a new baby.

I asked my mother, “Is that woman always here?”

“Maybe. I never noticed her before.”

At this point, I made up a story in my head. The woman always wanted to be a mother, I thought. Maybe she got this baby doll for Christmas and, for her, it is as real as any other baby.

As Mass came to a close, she carefully put a warm coat on the baby and lovingly wrapped her in a blanket. As for me, I directed my boys in a different direction so that they wouldn’t helpfully blurt out something like, “Don’t you know that is a doll?”

Who are we to interfere with her reality and her happiness? She clearly wasn’t bothering anyone, the baby (doll) was making her happy, and she got to share her love. We all have our own little version of reality anyway. This is evident when I mediate a disagreement between the kids, each of whom fully believes their own version of the truth. I am reminded of this when someone has the same values as me but their point of view differs radically from my own. And I live this when I take a new drug that shifts my version of what life is like. Through this experience, I hope that I am becoming more able to embrace the variety of views we each carry and meet each person wherever they are at that time. And I appreciate your embrace and good humor along the way!

Lots of love in this new year,
Marie

Woe to the complacent in Zion (Amos 6:1)

Thank you for all your prayers last week. As chemo weeks go, it was a good one. I was thrilled to be scheduled as the lector for the 8 a.m. Mass on Sunday, and I even felt well enough to get my body out of bed and to the church on time.

A theme of the readings on Sunday included helping those less fortunate. I reflected on my past 24 hours. Living in a city, we often see individuals at traffic lights, walking among the stopped cars asking for money. Though I am totally random when it comes to giving in that way, I had given money to someone the day before. And after Mass, I put money in a basket for women and children working to change their lives after sex trafficking. I probably have a ways to go, but I felt okay about my sharing, at least recently.

In my life, that kind of self-satisfied, or maybe complacent, feeling, no matter how mild, is like foreshadowing. I know that by now, but I can’t seem to stop it, so I basically think “uh oh” and go about my day.

When I left the church, my husband and kids met me with our dog. I scooped up the dog and drove straight to Fresh Pond to meet my friend, Mary, and her dog. The air was crisp and clean under a beautiful blue sky and the fall leaves stood out against the blue pond water. I felt good enough to walk, so, in the car, I happily changed from my skirt into yoga pants. I considered changing my shirt –who cares if someone sees my bra for a minute – but decided that it was too awkward to pull my blouse over my head in the car. (Turned out to be a good choice.) So I stayed in the same top, kicked off my dress shoes and got out of the car barefoot to retrieve my socks and sneakers from the back seat as the dog ran off to play with his doggie friends.

I opened the back door to the car and stood between that open door and the back seat to put on my socks and shoes. While doing this, I was happily chatting on my iPhone with my friend, Kathy.

Suddenly, a man appeared RIGHT NEXT TO ME. Not only did he invade my happiness circle, he was shoulder to shoulder with me.

I turned to face him. He held a cardboard takeout coffee cup holder with three cups of Dunkin Donuts coffee that appeared to be fresh. At first, I thought he was about to offer a cup of coffee to me.

Instead, he said something about my bare feet but it sounded confusing. I was suddenly aware that I had zero personal space and the car door behind me made it impossible to back up. I don’t generally mind talking with strangers but I do need my space. Plus, I wanted to finish my conversation with Kathy and find Mary, who was waiting for me.

From there, our conversation went something like this:

Me: “You are too close to me. Step back.”

Him: “I want to talk with you.”

“You need to leave.”

He got a little annoyed. Or maybe he was angry – I couldn’t tell – there was too much going on with my socks and shoes, my interrupted conversation with Kathy, the car door, and the funky vibes this guy was throwing off. I couldn’t process all of it, much less factor in how he felt.

“You need to leave. Right now.” I was surprised at how firm I was and how calm I felt.

“No.”

“You are creeping me out. You need to leave.”

I was able to move so that I was no longer stuck between him and the car door. I still had my cellphone in my hand. Apparently I am unwilling to let that go, even in a crisis. I must be more addicted to it than I think. It also kept me connected to Kathy, an expert in getting her way with difficult people. Her connection on the phone provided inspiration.

“I just want to have a conversation,” he slurred.

“I DON’T. You need to leave.”

He turned around and walked away, muttering nasty things about me as he did. I watched him walk until he was on the other side of the parking lot, where he seemed to meet up with some other guy and they walked together to the street. I put on my socks and shoes and stayed on the phone with Kathy until I found Mary.

Recounting the incident with Mary, she told me that he had approached her, too. Their conversation also felt creepy but she managed to ask how he was. Clearly, Mary has a kind heart. He told her, “I’m stoned and f’ed up” (though he didn’t leave out the letters).

So much for helping those less fortunate. Always room for improvement.

I felt okay about how I handled it. I was strong and clear and direct. But maybe there was a better way that wasn’t all about me. He wasn’t looking for money. I didn’t feel fear, so I wasn’t working from that. Maybe he just wanted to connect. It was not yet 9:30 a.m. and I had interacted with my husband and kids, talked with people at Mass, laughed with Kathy on the phone and looked forward to meeting Mary for a walk. Clearly I had an abundance of connections and communications that I took for granted.

It’s a tricky business to communicate with someone in an altered state of mind. I don’t know that any kind of conversation would have made a difference, any more than I can know that giving money to a homeless person makes any real difference. Still, I try.

It did remind me, though, that I often have more than I am consciously aware of, and that there is plenty to share.

Thank you for sharing your life with me, your time, your blessings. Thank you for being connected to each other, as it builds our huge web of social support. Thank you for your prayers. Though it may seem like a little bit, it makes a real difference.

Love,
Marie

Every word is a prayer

Again, I cannot describe my gratitude for your prayers and positive thoughts and the measurably positive impact they have on my life. Even if you don’t pray, your words and thoughts have impact and power that I can feel. Thank you.

Yesterday, I found myself in an hour-long conversation with our parish pastor. While that may sound like a common event in my life, it is not. Not because of him; he is a pretty cool guy. He is from a large Irish-Catholic family, has an easy sense of humor and is comfortable around people. Before he joined our parish, he was the priest who worked with oncology patients at MGH (while I was there). He seems to be around my age, so he doesn’t fit the mold of the authority figures from my Catholic school days.

But I continue to carry with me the image that priests are unapproachable, or at the very least, only meant to discuss “big” things, so I was surprised to find myself talking with him for so long. He was probably surprised too, but for a different reason. He was having one of those days where he didn’t get to even the first thing on his to-do list. At 4:00 p.m., he was about to finally start tackling that list when I stepped into his office “with a quick question.” I don’t think talking with me for an hour was on his list.

Regardless, he stopped and made time as our conversation unfolded. One topic was how children learn their faith.

Though I grew up in a Catholic family, we aren’t exactly a group of holy rollers. All of us went to Mass at least once a week, received the sacraments, and got married in a Catholic church by a priest. We baptized our children in the church and held Catholic funeral masses for our grandparents. But outside the formal structures, we don’t talk about religion or pray together, and we only say grace together before meals on special holidays. Our general beliefs were kind of assumed.

I live in a different environment now. In fact, I crafted an entirely different environment for my family and me where we used to joke that science was our religion. Though I may have morphed over the past few years, returning to my faith, that doesn’t mean that my family has been similarly inspired. I teach religious ed to kids at our church, but I have little clue about helping my children grow in their own faith, outside the formal structure of religion.

When my friend Genevieve talked about the way her grandmother wove her faith into their daily lives, I felt myself say, “Yes! THAT is how I want to be!” I want my children to be able to know God and access that part of themselves. When they are older, they can make their own decisions about the role of faith in their lives. While they are still young, I want to do my part to show it to them.

Father Thom suggested starting small. He noted that when you pray, God will meet you where you are. He will take what you offer and work with that. He suggested maybe just saying grace before a meal.

Ha, my internal voice said. We barely pause before we dig in. Besides, I have an agnostic husband and one son who insists that he does not believe in God. I was open to the possibility of it happening. I just had no idea how it would.

He and I didn’t pray during this conversation. We just talked. When we finished, I picked up my son from swimming. It would just be the two of us that night – me and my “I don’t believe in God” son. We were talking about his day as we sat down to dinner. When I took my first bite, he suddenly stopped and said, “Mom, we should say grace.”

The best laid plans

Chemo tomorrow (Tuesday). I still have a lingering cold so a part of me hopes that they cancel it. Who am I kidding –  most of me hopes that they cancel it. But I do appreciate your prayers and positive thoughts – they carry me through. Thank you!

I’m not sure how to plan for tomorrow, but I hold onto this thought: Some days work out even when they don’t work out according to plan.

The adventure begins when everything goes wrong.
–  from the movie 180 Degrees South

On the Monday before my last chemo treatment, I finished teaching religious education at our church and headed for the door with massive amounts of materials in my arms and my six-year-old son in tow.

A group of folks began setting up for the monthly church dinner, but I had other plans. I promised my older son that I would pick him up from swimming, and I looked forward to an amazing dinner at home. However, as friends filed into the church hall, my younger son lobbied to stay for the pasta and pizza dinner and to play with the other kids.

I, on the other hand, wanted to leave now, pick up my older son with a minimum of futzing, and go straight home. I didn’t want to swing back to get this younger one, no matter how fun it sounded for him.

By now, though, I risked being late for the swimming pick-up. When Deb generously offered to watch him, I rushed out of the church and into my car.

After loading everything into the car, I turned the key. It wouldn’t start. It wouldn’t even try to start.

After a brief moment of “okay, now what?,” I left messages for our sitter and my husband, hoping that one of them could pick up the swimmer and that my husband could come to jump-start the car.

It felt cold and dark both outside and inside the car, but when I lifted my head and looked through the car window, I noticed the warm lights shining through the windows of the church hall. With a surge of gratitude. I returned inside, joining my friends in their conversation and watching the kids run around. While it wasn’t the dinner I had been craving, we were warm and having fun with our friends.

Something spilled on the floor, and John, one of the husbands, took the lead in cleaning it up. I had seen him earlier as well, fixing a lock on a door while waiting to pick up one of his sons. Obviously a guy who can make things right.

“Hey, John, you do everything. Can you jump-start my car?” I was half-joking, but he answered me seriously.

“Sure. I have jumper cables in the car. Just let me know when you are ready.”

His wife looked at me. “You’re serious? Your car won’t start? You seem to be so relaxed about it.”

I don’t typically come across as relaxed so I spent a moment basking in this compliment.

Just then, Tiron called. He was back in cell range, had our swimming son with him and would be right over.

John and Tiron arrived simultaneously at my car and, between them, determined that the car would need to be towed. So, that was settled.

We gathered the boys just as the church dinner wound down, piled into Tiron’s car and headed for home. I felt strangely content.

Yes, we stayed at the church longer than I planned, our family didn’t have the dinner we anticipated and my car broke down….again.

On the flip side, I felt gifted that the car died in front a warm and welcoming place where we could eat a dinner that my kids really enjoyed with friends we don’t often get to see. I felt awe and amazement that someone was ready and willing to help us take care of the kids and someone else was ready and willing to help us with the car. And I felt lucky that I had the energy to flow with it all.

Throughout the evening’s events ran a calm assurance that every problem could be handled. The boys would be taken care of, food would appear, there would be time to visit and time to repair.

In my life, so many situations feel unresolved or outside my control. Having manageable problems and – this was huge – having others also believe these problems could be managed felt like basking in sunlight.

The evening didn’t go as I planned, but we received everything we needed in the exact moments we needed them. It was all perfect. Now I think I need a more reliable car….

I hope that you are finding that you get what you need in the moments you need it. That you are enjoying the longer hours of daylight, the friends who step in at just the right moment, and even a calm knowing that some problems can indeed be solved.

Love,
Marie