Moments

Thank you for the prayers and positive thoughts – they really help to get me through chemo and then rebound into life again. Thank you for the difference you make in my life.

My life lately consists of driving the kids here and there, driving to the grocery store, and driving to the occasional outing. It can feel routine.

But then, there are moments. Like:

  • Walking down the street on a beautiful summer evening, suddenly realizing that I can hear our neighbor (an acclaimed classical pianist) playing piano through her open window.
  • Noticing the unexpected. For example: I sent Anne a thank you note on this stationery:

Thank you card beach stationery And she sent it back to me.

At first I was simply puzzled and amused that she would do that. Then I saw that she included a photo of her own, along with the note: “This photo is of my favorite place on earth!”

Beach "favorite place on earth"

(The original was more in focus, but notice the beach umbrellas and the blue and white striped chairs.)

  • Driving home from church with my mom and talking about Jill’s surprise birthday party at the Red Sox game (which occurred well over a year ago) when I hear a honk from the car behind me. I look, and someone is waving – it is Jill. She even got out of the car at the next traffic light to say hello!

These are fabulous in the moment, but then…each time I replay them in my heart, I can get the same joy, wonder, laughter and amazement.

Thank you for creating so many of these moments, for me and for others. I hope you are feeling the ones in your life that make you laugh out loud, smile inside, love bigger and pause in wonder.

Love,
Marie

 

 

Guest blog post!

Pamela Post-Ferrante generously invited me to be a guest blogger on her site. Pamela is the author of the beautiful book Writing & Healing: A Mindful Guide for Cancer Survivors.

I wrote about connections, with many of you in my heart, though it started with one close group. Here is the link to the post:

http://www.writingandhealing.com/the-connections-that-carry-us/

Enjoy.

With love,
Marie

 

Managing pain

About a week ago, a dear friend was experiencing intense pain and asked me how I handle pain. I shared two of my approaches with her in an email. She suggested that I share them on my blog in case others can benefit, but I demurred.

A few days later, I received an email with this message:

You will have pain

John 16:20

That sounds ominous but it was part of a larger email – not quite so awful as it would be as a standalone message!

Today, a friend sent this to me:

(Cancer) really was a teacher for me about how to deal with pain. I had this kind of vision when I was going through a procedure, and it was an image of a tree falling into an iced-over stream. The tree shattered and the ice cracked. Then I had the same immediate scene replay itself except that it was springtime. And now the tree fell into the water. Even though it made a huge splash, the water flowed around it. So that was an immediate instruction to me on how to meet pain and difficulty. To let it enter me but to be soft enough to flow around it.

-Mark Nepo

I related to his experience and decided, okay, I will share my approach. I hope that it helps you if you need it, though no guarantees, of course.

Going through cancer gives me an opportunity to experience all kinds of pain. Physical pain caused surgery or by tumor or by who-knows-what else. The emotional pain that starts with the worry before the diagnosis and morphs from there.

My tools for dealing with emotional pain are limited primarily to repressing it or moving through it. So let’s just not look there right now.

As for physical pain, I tried, among other things, avoidance and willing it away. I tried bracing myself and steeling myself through it. However, none of those helped with intense pain.

My aversion to painkillers has led me to develop more tools for dealing with pain.

For example, I frequently have intestinal blockages that causes waves of pain. I used to experience the wave of pain, and when the intense part passed, I would brace myself for the next wave. I was tense and worried and just wanted it all to go completely away.

One day, on the theory that what you focus on will grow, I decided to try and focus, not on the waves of pain, but on the calmer spaces between the waves. The spaces in between were not pain-free, but they were far less intense. Soon I realized that I started to see the waves of pain as periods of peace interrupted by pain that would pass. It was still painful but made it much more bearable.

At another point, I attended a workshop at Kripalu called The Psychology of Symptoms, developed and lead by Douglas Brady. There, I learned to have a different relationship with physical pain and to sit with it. I know – doesn’t sound like fun, but it works for me.

These are the techniques I will attempt to summarize here.

For me, this works best if I start in a calm place – either from a space between bouts of pain, or from a brief meditation. If the pain is a familiar one, this works best if I start when I feel it coming on, before it gets into full force. But you can start from wherever you are.

Pain often radiates, so the first step is to find the focal point of the pain, the epicenter. Picture it in your mind’s eye. Picture space around it. Feel that space. Let the pain exist there for a moment.

Look at it. What color(s) is it? What shape? Is it moving / pulsing / breathing? Is it smooth or ragged? Simply recognize any characteristics it shows you. Notice how those characteristics change as you are watching.

When you are ready, notice if it is carrying any emotions. Does it bring any emotions to mind?

Does the pain correspond to anything you are noticing about it? For example, does it get jagged when the pain is more intense? Does it turn red? If this brings you more into feeling the pain than observing it, then skip this one. But sometimes, you can do this by feeling the pain without being crippled by it.

When you are ready, ask it any questions that come to mind, such as What do you need? Why are you here?

As you do this, continue to notice its physical characteristics and how they morph.

When you (and it) are ready, see if you can go a little bit inside the shape. What do you see there? You can go as far into the center as you are comfortable.

Continue to do this for as long as you can.

When you are done, just breathe. Fill the space inside with white or golden light. Keep breathing into the space.

As my family can attest, it isn’t that pain doesn’t hurt me, that I can magically make it go away. But practicing these when I need them helps me to meet the pain and difficulty with less resistance and to continue to flow around it.

I hope that, if you try this, it helps you. But mostly, I hope you don’t need it.

Love,
Marie

Learning From Others

When I look around, I see so many wonderful qualities in others that I try to incorporate into my own self.

For example, my friend Angela once said, “People pray for strength. I pray that bad (stuff) doesn’t happen to me.”

I loved that. I am inspired by her attitude. While I can’t become Angela, I try to incorporate her approach into my life view.

Last Monday, my mother-in-law (a surfer) took my younger son surfing, and he wanted me to go along and watch. I was thrilled to be invited, and beyond excited that I could actually go.

This is not his favorite video from the day, but it is one of mine.

You can briefly see him paddling, then popping up onto the board. He keeps his balance, gives two thumbs up and then, at the end, falls off the board. But my favorite part – he emerges all smiles and heads back out for another go.

When things don’t go as I plan, hope or expect, I don’t pop right back up and I certainly don’t rebound with big smiles. Mostly, I get annoyed and try to force it to be my way.

It is easy for me to say, “But THIS (whatever “this” is that I am trying to do) is more important / has greater consequences, etc.” than surfing.

Then I remember a later run he did, where he fell off the surfboard in a wave and, when he got out, told me, “That was really scary. It looked like the fin was coming right into my face.” That would be an important and big consequence. But even following that near-hit, he wasn’t discouraged. His smiles quickly returned and, after a brief break, ran back into the water with his surfboard.

In the meantime, the opening between heaven and earth continues to draw the people I love. This past week, my “chemo buddy” Julie said good-bye to this world and hello to the next.

Julie and I were diagnosed within months of each other, then connected through mutual friends.

We had much in common, including being close in age. We discussed treatments and side effects as well as mothering two young children and having a good marriage in the midst of all this. We eventually had the same oncologist and sometimes even the same chemo days.

As anyone with cancer knows, disease path is variable. Initially, mine looked curable and hers looked quite advanced. In fact, the doctors didn’t give her much time. But 6½ years after her diagnosis, she was still here, a testament to her strong will to endure incredibly difficult medical treatments and her strong faith in Jesus Christ. In fact, her memorial service emphasized her love and devotion to Jesus, which was present in everything she did.

Me, I sort of have an arm’s length relationship to Jesus. I have lots of questions about where he fits into the whole picture. I’m totally into the saints and spirit entities, the Holy Spirit seems to be everywhere in my life, and I’m crazy about God. So all that felt like enough for me.

But I was inspired by Julie and her service, and I decided to be open to the possibility. What do I need to do, to have what she had?

Of course, if you ask a question, the answer appears. The next day, I went to Mass and got this from the Gospel reading:

Then Jesus said to his disciples, “Whoever wishes to come after me must deny himself, take up his cross, and follow me.”
Matthew 16:24

Hmmm, that answer came faster than I expected. This path is certainly not what I would have chosen for myself, and I resisted for a long time. But now I think I understand that my life might not be what I set out to create. All I can do is step into what is in front of me, even if it often feels like this:

Your Plan - Reality

I try to incorporate Angela’s ability to aim high and focus on what I want. When it is apparent that I won’t be getting my way, then I hope I can let go and ride whatever wave is carrying me. And if I fall, I want to emerge smiling and ready to go again. And maybe, just maybe, I can follow his lead, even if I can’t figure it out.

Thank you for always encouraging me – it lifts me up and gets me going. Thank you for being such an amazing, incredible role model in so many ways. Your life and the way you live it creates energy and more life in others and in me. I send that love and energy back out to you.

Love,
Marie

Video went well!

Thank you for all your positive energy, through the most recent chemo session (which went as well as chemo goes) and for our family video. The video recording process went really well! We did it on the Saturday after chemo, and I had energy to do it, which was amazing in itself. The kids were not just cooperative but great, as was my husband. A wonderful woman named Kate from Life Chronicles walked us through the whole thing.

She started by filming me playing Legos with one boy, then with the other. She asked me to tell them stories while we played, like the story of their birth or funny memories that we share. Then my husband took the boys out for lunch while Kate and I filmed me. The two biggest segments there were the story of my illness so they know what I went through / what the experience was like for me (because they rightly currently experience it from their point of view), and the story of where my family history and how I grew up.

The former was difficult only in that I no longer think of my story in terms of “then I had chemo, then I had surgery…” but in terms of “then THIS cool thing happened and then THAT cool thing happened” so it was harder for me to stay on point and finally I just gave up and focused on the amazing miracles along the path. The latter segment was useful because I never talk about that with them in person – just too much always going on – and I love my family history.

The boys returned and she filmed my husband and me, then the four of us together. All in all, it went fine. I wasn’t the melting mess I anticipated, we all made it through together, and we got a lot of good information recorded. I’m glad I did it and I so appreciate all the energy you sent my way so that I could.

I hope you never need this, but if you or someone else does, or if you are simply interested, their website is http://lifechronicles.org. They are based in California but will travel.

Thank you for your support in this really valuable experience and product for my family.

Love,
Marie

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.