The new bucket list

“for whatever we lose (like a you or a me),

it’s always our self we find in the sea.” — ee cummings

I love ee cummings. While I’m usually quite the stickler for adherence to the rules of grammar, spelling, and punctuation, I’ve always loved that cummings eschewed the rules and let the words and his thoughts flow unbridled.

He’s quite right about finding our selves at the sea. Not finding ourselves, but our selves. See the difference? Actually, it’s quite hard to see; it’s more something you feel.

Losing your self in the morass that is a cancer battle is fraught with peril. Having a potentially fatal disease changes you. It messes with your mind, shakes your sense of security, and makes you question the future. Having a potentially fatal disease at a young-ish age with young kids to raise really changes you.

My blogfriend and fellow cancerchick Michelle writes about this change. She writes of fear, of wishing for a return to the carefree, pre-cancer life. She mentions fear. The fear of recurrence. The fear of not being here to witness the millions of little things, seemingly insignificant, yet the essence of what creates our life.

See, for a cancer patient, the fear is always there. It resides deep in the “self” that we wish to find in the sea. Despite best efforts to be brave, move forward, and face the unpleasantness that is life with cancer, the fear is there. Sometimes just below the surface, like a homemade marinara sauce bubbling fragrantly and yummy on the stove. Sometimes right on the surface, as evident and painful as a sunburn the first day on the beach. Fear becomes the new normal. Michelle writes of the “new” normal:

“My new normal, I suppose [is] living each moment with equal parts gratitude, for experiencing it and really soaking it in now, and fear, that it may be over too soon.”

Hear, hear. Well said, Michelle.

Another blogfriend, Lauren, writes similarly.  Because she is 5 years out from diagnosis while Michelle and I are more recent arrivals to cancerland, Lauren writes not of the ever-present fear but of the urgency to experience all the things we fear we might not be here to experience. The bucket list takes on a whole new priority post-cancer.

Says Lauren:

“It dawned on me that cancer survivors also have a different bucket list. One that isn’t the places we want to go, or what we want to buy or learn to do, but one comprised of the things we want to live long enough to experience and see come to pass.”

Yes, that’s true. While there are places I want to see and plenty of things I want to do, I know now, post-cancer, that there’s a difference. Everything is different post-cancer. I’m still looking for that new normal, and my bucket list changes somewhat, but one thing remains constant: while I’m still scared, there’s still plenty that I want to see come to pass.

For now, I’m enjoying the ocean breezes, the sound of the surf, and the sunset over the water, knowing that with each new day, there’s plenty to see. 


2 small heart attacks

The viewer mail is pouring in about this post and this one, in which I inadvertently gave y’all some reason to think you might be suffering a small heart attack. Many apologies. I didn’t mean to scare anyone or cause anyone to stroke out. I promise to be much more boring and much less dramatic in future.

Yeah, right.

I will get to coverage of Day 2 in Napa, really I will. It’s in the works. The trip was so fantastic, I want to do it justice, and sometimes that means ruminating, and you know I have very little patience.

thank you, AA Milne

As Winnie the Pooh referred to himself as “a bear of very little brain,” I am the blogger of very little patience. Working on it, people, working on it.

Thinking about Winnie the Pooh reminded me of how much I loved that bear as a little girl, and I’m sure somewhere in the deep recesses of my parents’ attic, there are photos of me surrounded by Winnie; my sweet mama never threw anything away. I had the Pooh treehouse with all the little figures: Pooh, Piglet, Rabbit, Christopher Robin, Kanga, and Roo. Oh, and Tigger. Don’t forget him. He’s c-razy! I had some Pooh pajamas that I wore nonstop, although not out in public like my little girl does in her jammies. I had a stuffed pooh, the original AA Milne version before Disney got its hands on him, and that bear went everywhere with me. I loved him so much I even gave him open heart surgery with my mom’s seam ripper from her sewing kit. I must have left the closing to my surgical assistant, because Pooh had a hole in his chest for the rest of time.

google images

Now that I’m all grown up, I appreciate Winnie the Pooh on a whole ‘nother level, and find the depth and meaning contained in his quotes so moving.

We’ve all seen this one, on a greeting card perhaps or a t-shirt: ““If you live to be 100, I hope I live to be 100 minus 1 day, so I never have to live without you.” So endearing when said by a cartoon bear, but if a human said that I’d want to barf. Those of you who know what a non-romantic I am will be shaking your heads right now. Go ahead, it’s all right.

This quote from Pooh’s endless wisdom does not make me want to barf, however:

AA Milne

This one is all right with me. Don’t know why, but I suspect it’s because it reminds me of my sweet mama, and how very much I miss her. It also reminds me of my favorite ee cummings poem “i carry your heart with me,” which I had planned to read at my mom’s funeral but I just couldn’t get the words out. The words are always in my head, though, and I especially like this part:

“i carry your heart with me (i carry it in my heart) i am never without it… you are whatever a moon has always meant and whatever a sun will always sing is you here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than soul can hope or mind can hide)and this is the wonder that’s keeping the stars apart i carry your heart (i carry it in my heart)”

I’ve always loved ee cummings’s disregard for capitalization and punctuation. To me it means the words themselves and the ideas they express are way more important than conventions. It’s as if he was in such a hurry to get these thoughts out of his head and his heart and onto the page that he couldn’t be bothered stopping for things that typically  make it easier for the reader to understand what’s been written. None of that mattered. He liked to present new ways to look at reality.

His romantic transcendentalism was not popular, however, and although he was the son of a well-known Cambridge family (his dad taught at Harvard and later was minister of Boston’s Old South Church), he struggled to get his poems published. His mom, Rebecca, had encouraged his love of writing, and lucky for the rest of the world, he persevered. It’s shocking to think that for some 20 years, he had to pay someone to publish his poems.

His poem reminds me to carry my sweet mama in my heart, just like Pooh suggests. But the root of the root and the bud of the bud is that it’s not the same as having her here. And as sweet as the words of cummings and Pooh are, they also lead me to the uncomfortable thought process through which every young cancer patient goes, whether we want to or not. The one in which we wonder about our mortality, as rates of recurrence, treatment pros & cons, and survival statistics tumble through our heads. For every success story we hear, we know there is someone who lost their battle, and we’re acutely aware of the new diagnoses that crash into ordinary people’s well-ordered lives every single day.

Having cancer sucks, but having cancer while you still have young kids at home really sucks. There’s the day-to-day junk that still needs to be dealt with, despite the gravity of disease, treatment, hospital stays, and ongoing drug therapy. I guess it’s not surprising that I find myself not really caring about whether I sign Macy’s daily folder, or wanting to punch the teachers who think another parent-driven school project is in order. Simmer down, teachers; I won’t really punch you but when you assign projects that my child cannot reasonably complete on her own, I do think about it, briefly, because it’s hard to muster the emotional energy needed to guide my child in her education, and I sure don’t want to have to make a trip to Hobby Lobby for supplies.

There’s a never-ending juggling act that comes with the cancer territory when young kids are involved. Like the fact that most of my doctor’s appointments are with surgeons, who tend to do surgery in the mornings and see patients in the afternoon. Sometimes that means I’m cutting it close when seeing the doctor and taking care of business while still making it in time to pick up the kids from school.

Like the fact that I never know when this beast will rear its ugly head again and interfere with our daily life, plans, and schedules. Payton’s Little League season is halfway over, maybe more, and I’ve yet to make it to a single game. For the first time in his Little League “career,” he’s played games for which neither of his parents was in the stands. Not the end of the world, by any stretch, and he’s a pretty resilient kid, but it still bugs me.

Like the fact that sometimes when my kids are venting to me about whatever problem is foremost in their minds, and all I can think is, “It’s not so bad…at least you aren’t dealing with the aftermath of cancer.”

But then I smarten up and realize that yes, they are dealing with the aftermath of cancer. It’s there for them, too, even though they don’t talk about it much or worry about it like I do. It comes out sideways, sometimes, like in Macy’s “getting to know you” questionnaire from the first day of school this year, and her answer to the question “What scares you the most?” Her answer: That my mom will get another infection. Geez, what happened to monsters under the bed? We’ve eclipsed that childhood fear and have sped headlong into unchartered territory here. Like Payton asking us about the annual summer trip to Boston and Salisbury Beach, and wondering if all of us will be going this year. Since I missed it last year, I want to be there even more this year, but part of me hesitates in promising him that, because with this damn disease and this damn infection, I just don’t know. I’m operating under the assumption that the answer is yes, we’re all going this year. But I shy away from promising it.