Grace

Definition: Grace 1) refinement of movement; 2) courteous goodwill

I have a few blogs that I follow, most of them cancer-related. Some of them not. Last year, I stumbled onto one while looking for instructions on making home-made Christmas decorations that turned out to be, in part, a cancer blog. The person writing is a young woman in her early 20s who was diagnosed with stage III esophageal cancer - a person infused with so much grace while dealing with a serious illness I have never seen before, nor since.

I have never been a graceful person. As a child, I regularly ran into, fell off of, or stumbled over things that other kids seemed to negotiate with ease. I swore off of high heels in my 20s because they were just too dangerous, i.e. embarrassing, for me to risk tottering around on.

Emotionally, I am not a graceful person either. Although able to keep my emotions in check the vast majority of the time, when they do erupt it is a dastardly, ugly thing to see. I cry, flail, cuss and generally am as UN-graceful as a person can be.

Even so, I long (no really - LONG) to have the strength, fortitude, faith, whatever it is - to walk through this perilous life with the spiritual grace possessed by this young woman.

Yet I continue to totter, as if on high heels, through this life and this disease, stumbling and flailing, running into, falling off of, and stumbling over the things that others negotiate with ease.

Some things never change.

Not Suffering Fools Lightly and Other Bits of Carelessness

I once had a friend tell me that I did not suffer fools lightly. I think that this is increasingly true. I have no tolerance for nonsense anymore and I seem to be able to zip my lip, bite my tongue, or turn my cheek less and less.

What this means is that if something bothers me, I say it out loud, ask why it's happening and maybe even suggest corrective behavior. Now to be clear, I'm not talking about things like when you receive the wrong food at a restaurant or someone accidently bumping into you or human sorts of things. I'm talking about nasty comments, selfish acts and generally rude behavior. I try to be reasonable and not aggressive, but this sort of simple openness does not suit our current social contracts very well - although I like to fantasize that I sometimes say things that others just think.

Example #1: I went to my sister's 50th birthday party last December. It was a simple affair with just family. Her brother-in-law was there and he made a couple of what I thought were fairly inappropriate, off-color remarks to/about my sister. I believe they were meant to be cleaver. I think he was being a major douche bag. Although I wanted to confront him at the time, I didn't say anything. The next time I met with my sister and her husband, however, I asked about him and the comments. I wanted to understand why no one was calling him out. Why do we tolerate bad behavior? To be polite? Is the definition of polite "to tolerate douche baggery"? I don't think so.

Example #2: the other day, I was riding the 'eL' home. I had just had my chemo so I felt a little barfy and had a bit of a headache. I had my eyes closed to make the ride go faster and suddenly smelled a cigarette. Now for those of you who don't know, smoking on the 'eL' is not allowed and it hardly ever happens, in my experience. I opened my eyes and looked around. I spotted a young white man smoking a cigarette, flicking the ashes into the palm of his hand, and then eating the ashes. I kept trying to catch his eye so that he could see my displeasure. Nothing. People were staring at him and covering their mouths & noses with scarves and cupped hands. About five minutes passed when he decided to get up and walk up and down the isle, spreading his cigarette smoke more evenly around the car. Something inside me snapped. I thought, "Really? Really? I have lung cancer, I'm on my way home from chemo and I and everyone else here have to tolerate this bonehead smoking INSIDE the 'eL' car?!?" I heard myself say rather loudly,

"Boy! Why don't you just sit down?!"

He looked at me at which point I could see that he was definitely 'not right'. "Just a little edgy...a little edgy," he said. "Oh crap," I thought. You never know when you run into someone who's 'not right' on the 'eL' what kind of 'not right' they are. Some can be pretty aggressive and kind of scary. But I thought, "In for a dime, in for a dollar," gulped, and said,

"Then put out the cigarette!" I shouted.

He stopped walking, dropped the cigarette and vigorously stomped it out. He continued to walk back and forth, but as it was the cigarette that was the biggest problem, I was satisfied. I was also surprised. If I would have known that all it took was a commanding voice and direction, I would have hollered at him from the get go.

There was a day, and not so long ago, when there was no way that I would have either talked to my sister and brother-in-law about a bonehead relative or carelessly confronted a person of questionable mental status in the confines of an 'eL' car.

Many of the fears that I once had are completely gone. I haven't decided if my new-found forthrightness is a good thing or not. I have to say, it feels pretty good.

I feel like I'm living honestly for maybe the first time in my life.

Podcasts & Vacations

I decided to take a break from my snarky self so me & hubby dropped the dog with grandma in Indiana and flew to Florida to see my parents. The weather was perfect and I think we all enjoyed each other's company very much. We just returned and I'm still feeling relaxed and content. A far cry from the fury of the last couple of weeks.

While I was gone, the podcast that I recorded with my oncologist went 'live'. If you're interested, you can find it by clicking here:

Patient Power

The site itself is a collection of information and podcasts about many different types of cancer. My podcast has some interesting information about lung cancer subgroups (people whose lung cancer is propelled by genetic disturbances) and targeted therapy. You also get to hear me talk a little bit. I'm not sure how interesting THAT is, but I have been told that I sound smart, so there you go.

At my last doctor's appointment, I spoke with my onc about the podcast and about some of the research that I'm planning on planning (no problem with procrastination here) and she gave me an article out of the Journal of Oncology and told me about an oncology conference that will be coming to Chicago in June and wondered if perhaps I might be interested if any topics surfaced that were up my research alley. I enthusiastically said yes and she said she would watch for the itinerary as the date approached and let me know.

This is exciting to me. Not only does it open doors for academic networks and interdisciplinary interaction, but my relationship with my oncologist is turning in a direction that I really like. Now, I supposed I understand that it's important to maintain certain boundaries, but it's nice to be able to talk to her about cancer-related topics that aren't necessarily tied to me and my treatment. I think that when you are trusting someone with your treatment and your life, you want to be something more than just another patient. You want to see them as a person and you want them to see you as a person - with thoughts and ideas and contributions to make - to matter to one another (to quote an earlier post).

It is completely and utterly cool.

Yay.

Better

A little dexamethasone, a little Father Bob and life has lost most of its angry red tinge.

Sigh...

Angry Day

I want my fucking life back.

You know, the one with the future.

Grasping...

That's what I've been doing. Grasping. Flailing. Clinging. Raising and waving my hand in the air. Signing up for way too much. Taking responsibility for things that are not mine or certainly not entirely mine. For the last couple of months I've been desperately attempting to fill every space possible with ME so that when I'm gone, there will be a gigantic hole and someone will notice the lack - the loss - the fact that I'm not there. I guess it comes down to that fear of annihilation. Poof! Gone! Like I never existed.

It's all ego, I know. It's the idea of having not have mattered that gnaws at me. That I have been so busy solving my own problems, some of which I brought on myself I might add, that I made no impact. No significant contributions. No matter.

So I volunteer for everything that comes up. If I see something not being taken care of or, in my opinion, mishandled, I take it on. Look at what I can do! I matter, damn it! I matter! Won't someone notice me now so that you'll notice when I'm gone?!

It comes from having cancer that's stable or in remission, I think. Life goes on as normal when it really, really isn't.

And then the guilt from being so pathetically unthankful that your cancer is stable and that you're not suffering your slippery way on the downhill slope.

Like I've said before, one of the biggest challenges of cancer is the head game. Lose it and you're doomed to die a thousand deaths before they actually plant you.

Ugh.

Coping with Cancer – How I’m doing it

Once all of my surgeries were out of the way and I was stable and back to ‘normal’, I had the time to seriously confront what a diagnosis of Stage IV lung cancer meant for me and for my life. Ever the student, I decided to enroll in an independent study class so that I could examine the academic literature on death and dying (D&D). I thought that examining what scholars of D&D have to say about the how society has and does deal with the topic might help me face my own fears. The paper that I wrote was ended up following the varying definitions of “The Good Death” in western culture, but included an analysis of several books written, at least in part, by people (or loved ones of people) who were dying (or had died in the case of CS Lewis) of disease. For the interested, these are the narratives that I included in my sources:

*Tuesdays with Morrie: An Old Man, A Young Man, and Life’s Greatest Lesson by Mitch Albom
*The Gift of Peace: Personal Reflections by Joseph Cardinal Bernadin
*Cancer in Two Voices by Sandra Butler and Barbara Rosenblum
*The Cancer Journals, Audre Lorde
*The Body Silent: The Different World of the Disabled by Robert Murphy
*A Complex Sorrow: Reflections on Cancer and an Abbreviated Life by Marianne Paget
*Not Fade Away: A Short Life Well Lived by Laurence Shames and Peter Barton
*Refuge: An Unnatural History of Family and Place by Terry Tempest Williams
(incredible book)
*A Grief Observed by C.S. Lewis

The following themes emerged from my analysis of these books:
1) Existential crisis/Liminality(the person set apart and outside of usual social rules)
2) The dying as sage/warrior/hero
3) Mind/body dualism (a sort of disembodiment, diseased body sabotages the ‘real self’)
4) Living ‘intensely’
5) Seeking the spiritual

By the time I had written the paper, I had experienced one through four for certain. What I hadn’t done is any active spiritual seeking. I have been and agnostic/scoffer for several years now, although I would occasionally attend mass with KB. I have since allowed myself to engage more fully in it.

In the book, Not Fade Away, Peter Barton makes the statement that he started to read and consider more spiritual things to help him not feel so bad about having cancer. This seemed like a reasonable idea to me. The university where I work offers a year-long retreat called Spiritual Exercises in Everyday Life, so I joined.

In his commencement address at Kenyon College in 2005, author and social critic David Foster Wallace stated that all people worship. The only difference is what they worship. Many people worship money and things, good looks or good health, but all of those things are transient and ultimately unsatisfying. I figure that worshiping a loving God, real or imagined, is probably better for me than worshiping anything else. KB and I started attending our local parish regularly. This has opened the door for both KB and I to volunteer, both at the church and at the local food pantry, something I’ve wanted to do for quite some time now. I’ve also become fairly active on www.whatnext.com, an online community for people with cancer. There is nothing that works quite so well to combat being overly focused on or feeling sorry for yourself than attending to other people who need help. I plan to continue this way for as long as I am able.