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.

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