Reflections on Month 6 and Beyond

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Last week this happened.

I had my 6 month infusion, and after 6 hours in the chair, I was able to ring the bell.

The infusion itself was exhausting – physically, mentally, and emotionally. And ringing the bell? That was a swirl of all sorts of emotions. I had finished at the infusion center, but my last month of at home meds started the next day. Phew.

I’ve been expecting this last month to be easy. I was mistaken.

The level of difficulty has me feeling distressed, and a tad bit guilty. Perhaps that’s a lack of humility. Or perhaps it’s a misunderstanding of the process and gravity of it all. I’m the queen of relentless positivity and possibility. That’s good — fantabulous even. But, sometimes I need to remember that the positivity and possibility are happening against a backdrop of struggle, and endurance.

Those two photos speak to me of this dicotomy.

I purposefully captured the struggle amidst the positivity in the first photo. My face is to the sun — and the Son. Simultaneously an IV is pumping a plethora of medications into my vein. That is fantabulous and awful. Fantabulous because they are helping me crush the cancer. Awful because they are pummeling my body, mind, and spirit. It’s often remarkably difficult to keep them from vanquishing me.

In the second, I am ringing the bell — indicating the end of my infusion treatment. I’m laughing with my awesome nurse, as she and others cheer me on. Immediately after, we embraced in tears. It was a moment of exhilaration, joy, and relief; as well as a moment of exhaustion, sadness, trepidation, and some disconnect.

Perhaps that sounds odd. Why wouldn’t I just be relieved and happy?

I was! But, those infusions, and those remarkably wonderful, brilliant, and caring nurses have become part of my life. There’s an intense comfort knowing those fantabulous nurses are waiting for me each time I go in. There is security knowing their expertise, and those meds they give me, are keeping me alive and helping me thrive. It’s difficult to leave them, and nearly impossible to express my depth of gratitude.

Add to that the current status of my cancer as incurable, and the emotions intensify. That nagging negative voice in the back of my head complains and points out that it’s not really the end. There will be more.

It is only now, over a week later, that I can take a breath, acknowledge the truth the voice raises, and remind it that even so, for the moment, I am done with the infusions, and that is good.

Meanwhile, I push on with my home medications. They are working their own particular magic. They press on against my cancer, giving it no rest. For that I couldn’t be more grateful. And yet, they continue to press on me as well, and that is not pleasant. Thankfully, they too will soon end, at least for this session. And that too will be a victory worth celebrating. They are no easier, and no less important than the infusions, so their conclusion shall be celebrated as well. (smile)

As I sit here with an pounding head, aching chest, and overall malaise, I chuckle thinking, “Perhaps we should all do more daily bell ringing!”

We took the time to meditate and pray? Ring a bell!
We pause for some breathing and positive thoughts? Ring a bell!
We see the beauty in the little things? Ring a bell!
We are the recipient of unexpected kindness? Ring a bell!
We have patience, and don’t crank at the person who accidentally stepped on our last nerve? Ring a bell!
We notice the miracles and gifts of every day? Ring a bell!
We don’t vomit — even though we feel like we might? Ring many bells! (laughter)

When my last infusion was finally finished, and my nurse excitedly said “Wait! You get to ring the bell! Give me your phone, I’ll take a photo!” I chuckled. The photographer in me thought “Where shall we take it?” I momentarily considered good backgrounds. Then my aching head and ridiculous exhaustion got the better of me, and my thoughts morphed into “Oh my gosh, let’s just take it anywhere!”

In hindsight, the background is perfect. Behind me are all the little infusion pods. Behind me are my six months of infusions.

BEHIND me.

They are behind me. Finished.
At least for now.

They are behind me. Making me cancer lighter.
That is miraculous

They are behind me. Exhausting me.
That’s something I have to remind myself.

These 6 months have not been easy. My body, mind, and spirit have worked hard, and had more bad days than good. They have been pummeled. They are fantabulous for sure, but they are going to take a bit of time to recover. When I talked with my Dana Farber oncologist in October he said “You should be feeling great (pause) by sometime in January.”

Sometime in JANUARY?!?!?!??? Eee gads. If I recall correctly, I thought to myself “Yeah, yeah, yeah. Did he just meet me?!?!” But, now, I realize the wisdom of his words. This isn’t a little sprint. This isn’t an easy workout. This is an endurance event. And no matter how fantabulous I am, as with every endurance event there is preparation, execution, and recovery.

Now I need to respect the final push, and the recovery.

With that in mind, I remind myself this final push of medications and side effects, as well as my recovery are supported by all the things I do in the background.

Where I am, and who is there with me — in person, prayer, and spirit — matters!

How I eat supports me and all my work.

The things I do, and the ways I think, fuel me.

I always tell my Kindergartners about the importance of the struggle in our lives and learning. One year, one of them reminded me with great conviction “The struggle is real, Ms. James, and it’s important!”

Yes, my sweet, courageous, determined, girl — you are right. The struggle is real and supremely important. So too are these things. They overflow with life, energy, hope, joy, possibility, and power. They enable me to endure, survive, advance, and thrive.

So, with a big breath, I remind myself (and perhaps you) sometimes angst is just part of the process. But guilt? Guilt is inappropriate. Patience, peace, and acknowledgement of all I am, all I do, and all I have accomplished (with the help of so many) — that is appropriate. Let the bell ringing continue.

But first, I must collapse for a nap.

14 thoughts on “Reflections on Month 6 and Beyond”

  1. Thanks for all these beautifully positive thoughts, Molly. They are very inspiring to all of us. You are absolutely correct, it is an endurance event, not a sprint. And in such an event, i’ve learned that the mind is every bit as important as the body.
    I love the bell analogy. Be quiet, body!! Be quiet, legs! I hear bells. We must be near the finish line. (More cowbell!)
    You are always in our prayers.

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  4. Hi Molly—I recently read this article and copied and pasted 4 paragraphs from it to post here for you—to me, your positivity shines through with gratefulness. God Bless You always and may the Greatest Healer continue to give you the courage and strength you need to get thru your treatments in the best way possible. XOXOXO

    Steindl-Rast gave a Ted Talk in 2013 where he stood on stage in front of a giant video screen looking very much out of place in his brown monk’s habit and sandaled feet. He spoke with a heavy Austrian accent and began by saying, “There is something you know about me, something very personal, and there is something I know about every one of you and that’s very central to your concerns. There is something that we know about everyone we meet anywhere in the world, on the street, that is the very mainspring of whatever they do and whatever they put up with, and that is that all of us want to be happy. In this, we are all together. How we imagine our happiness, that differs from one another, but it’s already a lot that we have all in common, that we want to be happy.”[i]

    But his topic wasn’t happiness; it was gratefulness. He asked: “How is the connection between happiness and gratefulness? Many people would say, well, that’s very easy. When you are happy, you are grateful. But think again. Is it really the happy people that are grateful? We all know quite a number of people who have everything that it would take to be happy, and they are not happy, because they want something else or they want more of the same. And we all know people who have lots of misfortune, misfortune that we ourselves would not want to have, and they are deeply happy. They radiate happiness. You are surprised. Why? Because they are grateful. So it is not happiness that makes us grateful. It is gratefulness that makes us happy.”[ii] And in that one sentence David Steindl-Rast revealed the secret of happiness: it comes from being grateful.

    That day I was preaching on the story of the Ten Lepers from Luke 17. Do you remember that one, where Jesus healed all of them but only one came back to say thank you? I said, “When he did that he closed the loop between gift and gratitude, in the same way throwing a switch, and closing an electrical circuit, can make a light bulb come on. I would guess that when he finally went to see the priest and show him that he had been healed his face was lit up in a way the other lepers’ faces were not.”[iii]

    You can understand that. You can understand how, if you had been healed of leprosy, you would be grateful, and how your gratitude might make you happy. But what about all those other days when you aren’t miraculously healed, when the real miracle is that you are able to drag yourself out of bed and get dressed in the morning? How do you find happiness then? David Steindl-Rast has anticipated that question. He says that when you receive something valuable, and you receive it as a gift, you are grateful. But it has to have both those qualities: it has to be valuable, and it has to be given. The healing of the ten lepers is a good example. Jesus gave them the most valuable thing they could have asked for, their healing, and he gave it to them free of charge. Steindl-Rast says, “When these two things come together, something that’s really valuable to me and I realize it’s freely given, then gratefulness spontaneously rises in my heart, happiness spontaneously rises in my heart. That’s how gratefulness happens.” Now, none of us is given miraculous healing every day, but each of us is given something that is no less miraculous, and that is every day, every hour, every minute.

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