Positively something

Before we get into the weeds, it occurs to me that I don’t usually post updates on my health status like most other cancer bloggers do.

It feels a little like boasting to announce “Look at me! I’m NED!” (See Introvert below.) As if something I did is the reason for my good fortune. Especially when there are people who aren’t doing so well. When I read so-and-so’s blog about how superb her care is (best oncologist in the country) and what a fighter she is and how her oncologist is simply amazed at her progress (never seen anything like it), I always think about the person who might be reading who isn’t doing so well and who doesn’t have access to superb care, but who is desperately looking for answers or comfort.  I don’t know.  Just me, I guess.

I read a lot of cancer blogs.  Once I decide I like the blog and will keep reading — trust me, there have been some that don’t make it past the first sentence — I always look for a timeline of the author’s cancer.  And, naturally, I compare it to my experience. I don’t know if other people with cancer do this. Probably. We’re all looking for answers. For comfort.

Anyway, I’ve opened my big mouth so I guess I have to report that my last scans in March, 18 months out from treatment, showed continued NED (no evidence of disease).  According to my oncologist, the median survival for my kind of cancer with treatment is 15 months.  So, I’m lucky. I’m still here. And I’m  doing fine.  This moment, this hour, this day.

Now, let’s carry on with some of my curmudgeonly insight…

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One of the features of being an introvert is that you’re not inclined to share every little thing that happens in your life — or even every big thing that happens in your life.

Like cancer.

As a result, relatively few people who know me outside of this blog or who know me but don’t know about the blog are aware I have cancer.  The few times I told people was when I was bald to answer questioning looks at my head, or on a need-to-know basis.

By so few people knowing I have lung cancer, I’ve been able to avoid the two utterances That Might Make Me Hit Somebody One of These Days:

 1. “Did you smoke?”
 2. various forms of the Positive Attitude TM admonition, which, IMO, is quickly gaining steam as the most annoying of the two utterances and may dictate greater injury.

I’ve never had anyone ask me the first to my face — but you know they’re thinking it — which I can attribute to knowing people with common sense and good manners. Or it could be that I’m just not around that many people and it’s the law of averages.

The second one I have though. It came from an acquaintance scolding, “Well, I can see someone needs an attitude adjustment!” after I mentioned that the prognosis for someone with lung cancer was grim.  If she hadn’t been on the other end of a phone line, I might have punched her.

To be realistic about your cancer is not the antithesis of being positive.  You can be positive and realistic at the same time.

See, here’s the thing.  Cancer makes people afraid.  Afraid of getting it, afraid of the grief, afraid of their own mortality.  So they throw up that screen to warn you that they’re afraid by deflecting their fear back onto you either by blaming (“Did you smoke?”) or by meaningless counsel (You’ll beat this!  Just be positive!).

Which brings me to the point of this post:  This article about things not to say to someone with cancer and some recommendations for things you can do.

********

I’ve never seriously wished cancer on anyone.  But this guy might make me reconsider.  “Mo.”  Must be short for Moron.

Stay positive!

Memories

These days it’s hard to find a breath of fresh air in the midst of the suffocating, soul-sucking black cloud that engulfs us all 24-7;  namely, Donald Trump and his syndicate of grifters, ghouls and goofballs.

Between lung cancer and Trump-drama, good things sometimes get buried in my worry pile.  I savor all the bright spots I can get and it’s nice to have a place like this blog to share them.

Yesterday in his column Charlie Pierce mentioned that country music legend Glenn Campbell can no longer play a guitar because of Alzheimer’s progression.  This is profoundly sad news for those of us who grew up with Campbell’s music.

I’m not a big fan of country music (except for the old stuff), but I am mesmerized by anyone who can flat play a guitar and Glen Campbell was one who could, in spades. I think his talent in this area was underappreciated, or perhaps overshadowed by his fame as a singer/song writer.

Pierce has some “skin in the game,” as he says, when it comes to Alzheimer’s because it lurks in his family DNA. While there is no Alzheimer’s link in my family history, it’s the disease I fear more than cancer. Yep, more than cancer.

One of the reasons I keep this blog is to record (and remember, thanks to chemobrain) meaningful things I’ve read or heard.  This video is one of those things. It’s also the reason I mentioned Charlie Pierce – to attribute the link in his column that took me to the video. It evoked a memory for me that I’d like to keep and share.  Thanks, Charlie Pierce.

How fortunate we all are to be able to remember the gift of Glenn Campbell.  (And Roy Clark, too.)

Enjoy your Sunday.

Am I still here?

Well hell. It looks like it.

In that case, might as well try a new look for the blog so you won’t notice that I haven’t written anything in a month.

The Two Things page may not get updated anytime soon because now that a walking mental disorder and his presidential* shitshow have invaded our national psyche like a black, fetid plague, I’m having trouble piecing together even one good thing to enjoy about life, except going to sleep at night so I don’t have to think about the havoc he’s wreaked on decency and democracy in less than a month.

So, random …

. . .  For Cancerland residents (think of us as a retirement community in Arizona), tonight’s ALCF Living Room (Addario Lung Cancer Foundation) had an informative session on liquid biopsy.  Even if you aren’t a resident and you like science, it was interesting. Biology is a thrill, I tell ya, a stone thrill.

. . . Today my grandson wrote a letter to NASA asking if they could build a cloning machine. If they could, would they please send him one as soon as possible so he could “clone mommies.” This after his mother could not extend their Legos session to forever because she had to cook dinner and was just one person and, therefore, could not play with him and cook at the same time.

. . . When you get old, here’s what you spend your money on:  car repair and plumbing, and the occasional grocery sack or two of food. Over and over and over again.  That’s it. That’s your life.

. . . Oh wait. I just thought of one good thing:  Melissa McCarthy on SNL. Brilliant.

. . . Oh, here’s another:  Maru the cat.  (H/T to Roxie D. at Zuzu’s Barn)  Note: You might not find this funny or even remotely interesting if you do not have a Scottish Fold cat, or if you are not a cat person, or if you are not addled and strange like me, a shell of a person now reduced to sharing cat videos.  If so, you are excused from watching. No hard feelings. I understand. However, my daughter has a Scottish Fold and they are the comedians of cats. Really, they’re hilarious.

. . . Oh, and my friend Jerry’s Greek Lemon Rice Soup. Stuff’s addicting. I don’t eat animals, so I use Edward & Sons Not Chick’n Cubes, which my husband cannot discern from chicken broth and I don’t tell him.

So, there are three good things, but that’s it. That’s all I got today. Well, it’s not all, but it’s the best of what I got today.  Trust me, you don’t want the dregs.

And the winner is…

award

During treatment last year at MD Anderson, I passed many idle hours in various waiting rooms holding awards shows in my head, judging the bald pates of fellow cancer travelers.

The Baldies. The Noggins. The GI Janes. I never settled on a name.

I started with a single category of Best Shaped Head, but depending on wait times or frequency of appointments or lack of any captivating reading material, I expanded the show’s categories to include  Smoothest (least bumpy), Best Proportion to Ear Size, Best Head for Resting Glasses Atop, Most Like Sinead O’Connor, and speaking of Sinead O’Connor, Best Tattoo (surprisingly there was only one contestant for that one during the whole six weeks the awards were held), Best Skin Tone, and so on.

There were awards for head covers or hats, too: Best Overall, Most Whimsical, Best Use of Upholstery Fabric (a one-time fluke), Best Knitted, Best Configuration, Best What Were You Thinking with That One Girlfriend, etc.

I envisioned myself in a bouncy little Medusa ** number, but couldn’t find any retailer that sold head covers festooned with coiled snakes. Oh to be crafty with some felt and wire! [See update below]

Judging was exhausting.  MD Anderson is a big place. So many heads, so many head covers. While the exercise served to kill time, it also made me realize that a well-shaped head or an attractive head cover can make all the difference in your attitude.  Giving you that extra little kick of energy and confidence you might need, right before chemo and/or radiation pummels it back out of you.  But for that moment in Camelot, you can revel in your pulchritude, saying to yourself, “My head is round and perfect.  My head cover is stylish and smart. I am Audrey Hepburn at Tiffany’s.  Bring it on, cancer.”

I do not have a well-shaped head, nor could I ever get the hang of scarves or head wraps, especially those clever ones with the knot on the side.   Also made my arms tired trying to tie them on my misshapen head.

Had I included a cancer shlub category, I would totally have won.

** Update:  Thanks to fellow traveler and master knitter Anita Figueras aka SciFiKnitter for the link in her comment below.  She knew exactly what I meant when I said I envisioned myself in a head cover with snakes all over it.  The link also prompted me to correct Hydra to Medusa.

Happy New Year!  Grace, inspiration, peace, kindness and humor to all of you.  I look forward to your comments and your blogs.

PTSD

Hey there.  It’s been a while.

My latest scans (September) were clear. Again. Another 3-month reprieve.

I’m clear a year after my last chemo, 18 months after diagnosis. Not notable by lung cancer survival statistics, but considering I didn’t think I’d be around at all, it’s somethin’.

I’m doing very well, aside from the pesky daytime sleepiness and fatigue that came on in March and won’t go away.

I had every intention of blogging more.  Really, I did. I was out of the fog of having to work through every day not being doomsday.  I had a clearer vision of what I wanted to accomplish on the blog.

But then came November 9th.

I’ve been as despondent in these few weeks after the election as I was in the weeks and months after learning I had cancer. It was the same feeling.

No kidding.   If you want to know what it’s like getting a cancer diagnosis, you just did, on November 9th.

I’m not going to start posting links to articles about the nightmare that is about to engulf us all because it’s over and done and it’s pointless.  But this one merits a mention.

And on that note, a little Dead to cheer us up.

Gathering in

Long story short, more than a decade ago I had surgery that involved relieving pressure on several cranial nerves by a blood vessel.  As a result of this procedure, I lost hearing in one ear, except for a constant whooshing sound.

Hearing loss is devastating for some people.  For me it is sensorially overwhelming and physically fatiguing in a room full of conversation, and frustrating to strain to hear something I want to hear, but like most disabilities, you learn to cope with it.  Luckily, I’m an introvert, so I relish the quiet and isolation hearing loss brings, especially since my cancer diagnosis.

I’ve learned to gather in, get inside my head, meditate, piece things together or take them apart, stay mindful of the moment, discover or marvel at something I might have missed if I were busy hearing and talking.  It helps me transcend the constant turmoil of cancer.

I’ve been mulling over a post about this gathering in that comes with my hearing loss, but I couldn’t find words that made any sense, so I laid the idea aside.   Then yesterday, while catching up on blog reading, I came across a beautiful piece by one of my favorite writers, Jan Wilberg at Red’s Wrap.  This last paragraph of her post called “Old Pony” (about her hearing loss) captures what I could not.

There is talking going on but I’m not part of it. I marvel at the oldest pony’s white eyelashes and the wrinkles on his horse nose. Deep wrinkles like what you would see on a person, what you would see on me. I think about this while the others are talking, little pieces of their words slipping in under the wind. I think only about the old pony’s precious, soft nose and wanting to smooth his wrinkles with my hand.

Thank you, Jan.

Lessons

Cancer teaches many lessons.  The main one being don’t sweat the small stuff.

This story is about what happens when you sweat the small stuff in affluent suburbia came by way of Kevin Drum at Mother Jones.  (By the way, Kevin is a fellow citizen of Cancerland.)

It’s very sad and makes me wonder why people with so much would waste their lives on revenge for some perceived slight.

I’m not even sure why I’m sharing it except to remind myself and all of you of the lesson.

Another lesson from cancer:  Dance while you can.  So move it.

Two Things

  • Ellen DeGeneres
  • Dancing