Reflections on Month 6 and Beyond

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.

Conscious Ink

My diagnosis anniversary date is December 16. My feelings each anniversary are a combination of positive and less-than-positive emotions. I notice, acknowledge and feel the sorrow and other less-than-positive emotions, but I highlight and emphasize the positive emotions by celebrating!

In the past I have dyed a fuchsia streak in my hair with kool-aid, distributed glitter, and shared sparkly temporary tattoos. This year I decided to continue the temporary tattoos, but wanted to find the perfect tattoos. After some searching, I found Conscious Ink.

Here’s the first paragraph from their site “Can a temporary tattoo leave a lasting impression on our disposition? Solidify our intentions and affirmations? Make a permanent mark on the world? Crazy as it seems, Conscious Ink founder Frank Gjata says yes! Conscious Ink is on a mission is to spread love and raise consciousness around the world, one body at a time!” lol! HOW AWESOME IS THAT??!?!

I looked at their many offerings and chose 3 that spoke to me.

  • Breathe
  • Be brave
  • Anything is Possible

Great messages, right?!

I eagerly awaited my package. It made it to me the day before my anniversary. YAY!!

I wasn’t disappointed when I opened the package and examined the stash. Everything had such beautiful spirit, joy, humor AND creative thinking

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The tattoos themselves are great (non toxic, safe, made in the USA), but, the instruction card that comes with them pushed them over the edge into fantabulous! lol. As I read it, and followed the instructions, I chuckled to myself thinking “Wow, this is some cool creative thinking!”

I don’t know what “How might we …?” questions Frank and his team asked themselves, but here’s one I thought they must have considered.

How might we infuse each aspect of the temporary tattoo experience with mindfulness, intention, joy and good energy?

I laughed out loud – not making fun, but from surprise and enjoyment – when I read their instructions for the actual tattooing. As with most things, temporary tattoos don’t just magically happen. There is a process, and it includes waiting. Waiting is sometimes a drag, or something we endure and hope away, rather than experience with mindfulness and purpose. Not so, the Conscious Ink people.

What do they say? “Patience is a virtue.” LOL! That still makes me laugh out loud. They suggest you take the time to think about what it is you want to manifest. I love that!!! Take those 30 seconds or more and be present. Think. Breathe. Have the thoughts (joy, gratitude, hope) and do the things (breathe, celebrate) that were the reasons you chose your tats.

I followed the instructions – patient, mindful, purposeful being, instead of just waiting. It was a lovely 30-60 seconds. I am going to have my K students do this when I share the tats with them in January. I may even have them join in some writing about their tattoos and intentions. We shall see.

I am impressed with the thought and creativity of Conscious Ink. It enhanced my temporary tattoo experience. But, it’s also a wonderful reminder to me of what can be accomplished when we approach our work and life with purpose, intention, humor, joy and creativity.

By the way, Frank has some other nice sites (and by nice I mean pretty cool, awesome, fun etc. etc. etc.) worth checking out. They seem to all be linked from his website Blississippi. Give them a look if you have a moment.

And always remember … Breathe … and be brave.