Three Years

Unless you have or have had cancer, you won’t appreciate the significance of the title of this post.

Cancer anniversaries, regrettably nicknamed “cancerversaries” (see “anywho,” “guestimate”), are measured not from diagnosis, but from end of treatment.  I don’t know about all protocols, but mine consisted of six weeks of radiation (5 days per week, about 20 minutes per session) interspersed with five rounds of chemotherapy.

The first three chemo sessions were low-dose support to the radiation, the last two were full-blown, as in the kind where the nurse stands in the doorway and watches you for a couple of minutes after the IV starts to make sure you don’t spontaneously combust. (Maybe that’s why she/he stands in the doorway and not right next to you in the bed or chair.)

On Friday September 25, 2015 I had my last chemo session. My localized, non-met tumor shrunk to nothing, I survived a clinical trial, the chemo and its concomitant hell, 10 days in the hospital for pneumonia, unrelenting fatigue and the infamous “chemobrain.” Three years later my status continues to be NED (no evidence of disease).

What’s important about this anniversary is that I’m more than halfway to the 5-year survival milestone.  Each year I stay NED there’s a greater chance the cancer won’t come back. My oncologist says now there’s roughly a 20% chance of that.  Of course, that could change in the time it takes to divide a cell, and I never forget that. No one with cancer ever forgets that. But for now I appreciate how incredibly lucky I am to have had these three years.  And, that’s all it is – pure luck. And, maybe the good sense and geographic fortune to seek treatment at M.D. Anderson.

Three years.

Three years in I never expected I would have. Three years to watch my grandchildren grow taller and stronger and be amazed at things they didn’t know the day before. Three years of imagination and Watch me! swimming and holding hands on the way to the park. Three years of birthdays and books and bedtime nuzzles. Three years of the people I love. Three years of ice cream and summers and grilled cheese sandwiches. Three years of school days and fall carnivals and Halloween costumes. Three years of Christmas anticipation and magic. Three years of moons and rainstorms and spaghetti with Rao’s marinara. Three years of dog smiles and soft cat paws and animals rescued and loved. Three years of cupcakes and birds and winter wind in the trees, the first smell of fall, summer night breezes and stars. Three years of life in this lousy, trump-infected world. 

When you have a lethal form of cancer, your mortality eclipses your view of the future.  And that’s something that no one who doesn’t have cancer can understand. It’s the first realm of separation.

In his book When Breath Becomes Air, Paul Kalanithi writes,

“The future, instead of the ladder toward the goals of life, flattens out into a perpetual present.”

When you’re older, the ladder of goals is pretty much worn down to a slightly elevated ramp, but even then your consciousness dwells where future is inherent. There’s always tomorrow. A cancer diagnosis dispels that notion.  Your world shrinks and flattens out while the larger one goes on without you. You recede, but you learn to find your place, your serenity, your joy in small present moments and you hold onto those for dear life. (Some of mine are here.)

So, three damn years. Yeah.  Here’s to those ahead of me, behind me and, especially, to those we remember.

 

Shouldn’ta left your keys out, Pops

A golf cart. Photo courtesy of a Google search and Allstate.com

One summer, when I was 10 or 11, my older brother and I “borrowed” our father’s golf cart from the cart shed at the country club1.  It was my brother’s idea.  I was just along for the ride.  Or not, as it turned out.  (My father was playing golf at the time.  He played golf so much I thought that’s what he did for a living.)

I wanted to drive the cart so I kept trying to grab the steering wheel away from my brother.  We fought, the cart swerved, —  lookout! lookout! — my brother lost control and I went flying off the side, hit my head on the concrete in the parking lot and blacked out.  I don’t remember anything after that.  I’m sure I got in trouble, but I’m also pretty sure I milked it the whole way.

Aside from the dementia I will surely suffer as a result of this wholly avoidable accident and ensuing brain damage, it might also explain my overall quirkiness, which includes a fun talent for making shit up — book titles, colors, songs, character names — that I’m sure will come in handy later on when the dementia hits and my mind is cooked cabbage.  (If cancer doesn’t get me first.  What a fun future:  dementia or cancer.)

As an example, these are book titles I wrote down on the notebook beside my bed.  Tell me you wouldn’t be dying to read these:

Any Number Less Than One

Paltroi

Twilight’s Blessing of Carnage

Vuk Proleo:  The March Backward for Hungary

Zan Coco Sayer:  My Years as a Feather Girl

Don’t ask me what any of them mean.  Have no idea, I just make them up.

I’m guessing they are trapped in that space that was damaged when I blacked out, and they seep into my consciousness periodically, in a pathetic attempt to escape the curcoil of my mind. Maybe. Curcoil, another word I just made up.

Also.  Don’t even challenge me to a game of Balderdash because you’ll end up on the pavement.  I mean it.  Champeen.

Yeah, I spent my childhood as a country club brat.  Until my father left us.  With nothing.  Thankfully, I had a resilient mother and some straight up kick-ass grandparents who together saw to it that we had fine childhood.

Cat scans

Adorable Dora, who never grew past pixie size.

I was working on a post about the persistent, underlying, aggravating, self-absorbing fear that takes over your life when you have cancer, but I’ll save it for another day.

I have quarterly CT/PET scans coming up in a couple of weeks, and I’m in the midst of fending off a little bout of “scanxiety.”  It gets easier as time goes on, but it’s still very tiring and very annoying and there’s just so much you can stand of thinking about yourself, you know?

So… let’s talk about something else.

I know. How about cats!

My sweet neighbor sent me an email with the subject “To a great cat-saver.”  (Hmm, wonder if she meant “cat-saver” as in cat rescuer or if she meant “cat-saver” as in hoarder? Could be both, I guess.)

Anyway, it’s cute and it made me smile in between the aches and pains I just know are signs of explosive metastases.

My great aunt was a writer and a cat lover (also a Christian Scientist married to a doctor, but that’s another story).  She often wrote poems like this one, so it made me smile to think of her, too.

Stray Cat

Oh, what unhappy twist of fate
Has brought you, homeless to my gate?
The gate where once another stood
To beg for shelter, warmth and food.

For from that day I ceased to be
The master of my destiny.
While he, with purr and velvet paw
Became within my house, The Law.

He scratched the furniture and shed
And claimed the middle of my bed.
He ruled in arrogance and pride
And broke my heart the day he died.

So if you really think, oh cat,
I’d willingly relive all that
Because you come, forlorn and thin
Well . . . don’t just stand there . . . come on in!

Franic Witham

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.

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.

Sorry, lot full

lot_full

Yesterday I drove to Houston and MD Anderson. I had no appointments, just picked up a prescription.

The parking lot at the Main Building was full.  So was Valet Parking.  They put those orange traffic cones across the entrance when Valet Parking is full. This always makes me sad.  It usually means too many people are inside the building finding out they have cancer.

The Main Building lobby was crowded.  Lots of people, some of them clutching new patient packets, looking at maps, asking for directions.

Wondering if they’ll ever find their lives again.

Two Things

  • New note pads  – Do you smoothe out that first sheet with your hand?
  • Ceiling fans  – on the low, lazy setting

 

 

To the moon, Alice…

I’m not an effusive person, but I did (kinda) jump up and (kinda) shout “Yes!” during last night’s State of the Union address when President Obama announced Vice President Biden, who recently lost his son Beau to cancer, would be “mission control” in a Moonshot for Cancer.

So, yea/yay for  MY PEEPS (And your peeps, too, whereever you get treatment.)

Also, I found this interesting.  It was linked in the Forbes article.