Tuesday, September 5, 2017

CHEMO MAKES ENGLISH MY SECOND LANGUAGE

ONE ENTERTAINING RESULT OF CHEMO BRAIN IS MY INABILITY TO FIND AND RETRIEVE WORDS. I TOLD A FRIEND THAT SEARCHING FOR THE RIGHT WORD IS LIKE FUMBLING IN A LADY'S BIG HANDBAG STUFFED WITH THINGS, AND ONLY FINDING--TORN KLEENEX, OLD MOVIE STUBS, STALE TUMS, BUT NOT WHAT YOU WANT.

CASE IN POINT--ON TODAY'S WALK WITH RICK AND OUR DOG UP THE ROAD, MY HUSBAND REMARKED, "I THINK I FELT A DROP OF RAIN." I SAID, "IT WOULD BE HARD TO FEEL IT WITH ALL OF THAT VERBIAGE OVERHEAD." A FEW SECONDS LATER, I GAVE AN EMBARRASSED LAUGH AND SAID, "I MEANT FOLIAGE. FOLIAGE." YOU LITTLE SNEAK, HIDING IN MY RIGHT FRONTAL LOBE!

ANOTHER INCIDENT OCCURRED IN JUNE WHEN THIS FRISKY, BLUE CERAMIC FISH FOUNTAIN I HAD BOUGHT FOR FATHER'S DAY BEGAN TO SPOUT WATER OUT OF ITS MOUTH.  IT IS ON OUR DECK AND IS HOOKED UP TO A SMALL SOLAR PANEL WHICH POWERS THE FOUNTAIN. "LOOK!" I SAID EXCITEDLY. FISH? GIRAFFE? CHLOROX? FEENAMINT? "AH, JUICY MOUTH IS SPOUTING, HONEY." SO NOW THE FISH IS CHRISTENED, "JUICY MOUTH."

YESTERDAY I ASKED RICK, "WHERE ARE THOSE--UM--THINGS THAT KEEP THE SUN FROM BURNING HOLES IN YOUR RETINAS?"  HE DIDN'T KNOW WHERE THEY WERE, BUT BY FAITHFULLY TRAWLING OUR LOWER FLOOR I FINALLY FOUND MY SUNGLASSES. I CAN RECOGNIZE THINGS VISUALLY JUST FINE; IT'S THE NAMING OF THEM THAT IS BEYOND MY CRUMPLED BRAIN.

THIS REMINDS ME OF MY STEP-MOTHER, ATHENA, WHOSE DAD WAS BORN ON SICILY. HAVING ALSO LIVED IN ITALY FOR AWHILE, ATHENA COULD SPEAK ITALIAN FAIRLY FLUENTLY. BUT EVERY NOW AND THEN SHE WAS REDUCED TO DESCRIBING WHAT AN OBJECT DID AND WAS FOR, AS IN, "PLEASE PASS THE BLACK STUFF WE PUT ON FOOD TO SPICE IT UP."  I AM WITH HER ON THIS.

PEOPLE TELL ME THEY HAVE THE SAME TROUBLE, "OH, WE'RE ALL GETTING OLDER, ANNIE, DON'T WORRY!" BUT THAT IS NOT IT. TRUST ME. ONLY A YEAR AND A-HALF AGO, PRIOR TO CHEMO, I WAS MOSTLY IN MY RIGHT MIND. I MIGHT FORGET A FEW THINGS, BUT I SURE AS HELL WAS NOT CALLING A WATER FOUNTAIN, "JUICY MOUTH," OR SUBSTITUTING "VERBIAGE" FOR "FOLIAGE."

THERE ARE MANY OTHER HUMBLING EXAMPLES, BUT SOME ARE TOO HUMILIATING EVEN FOR THIS BLOG. BUT MAYBE THIS IS THE POINT OF THIS WHOLE JOURNEY OF RECOVERY--LEARNING HUMILITY.  WHEN I CAN'T FIND A WORD, I SHRUG, SMILE, SUBSTITUTE SOMETHING VAGUELY ALIKE, AND MOVE ON. MAYBE MY BRAIN WILL COME BACK--MAYBE IT WON'T, LIKE OUR TERRIER CHASING AFTER A SQUIRREL UNTIL SHE'S OUT OF SIGHT (BARKING HYSTERICALLY), AND REFUSING TO COME WHEN CALLED. SOME FOGGY MORNING MAY FIND ME ON OUR DECK CALLING, "HERE BRAIN, COME BACK BRAIN, I MISS YOU!"

Saturday, August 26, 2017

TRUMP IS KILLING HOPE!


No question about it--it is hard to maintain hope with Trump in power. I try to protect myself from the news, but like an addiction, each morning I find myself sipping coffee, reading the NY Times online, then the Guardian, then Twitter--just in case I missed something dreadful that would make me snort coffee up my nose.

Such as: a poor woman with brain cancer who can no longer afford her premiums ('cause the insurance industry is all roiled up due to Trump's egregious threats); or how Mr. Zinke is going after Bears' Ears Park in Utah; or how the GOP is stacking the judiciary with young, radically conservative judges who will be in power for ages; or how many immigrants no longer dare come to our country. I can no longer look at pictures of the Statue of Liberty without wincing.

Recently, I was chatting with an old friend who works at a small graduate center on the other side of the country. She lamented that enrollment was down this semester. Pausing during the conversation, she then observed, "You have to have hope to go to Grad School, to take on that debt and feel you will have a better future."

I have two adult "kids," millenials, and I sometimes wonder what their lives will be like once we are gone.  They are both bright, educated, and committed to helping others. But will their lives be more constrained than ours were, growing up in the 50s-60s?  Will they have health care that covers more than the basics? Will one be protected by laws forbidding discrimination against the LGBTQ community? I don't know.

Another old friend with two daughters, millenials, said they aren't hopeful about their future, and that they are grateful they have dual citizenship in a country in the Commonwealth. Then, if things become truly tire, they can go live abroad.

A member of my Writers' Group said recently, "If I were younger, I'd move to Denmark just so I wouldn't have to hear about Trump!" I have felt the same way; if I were younger, with small children and an independent income, I'd seriously think about moving to Denmark. But, that ain't happening.

So--we sit tight; wait out Trump's administration; hope the Dems put up some good candidates that people will vote for to break the GOP monopoly in Congress; donate money to good causes; resist and keep the faith; drink good wine (remember--Julia Childs said, "Life is too short to drink bad red wine."); love our circle of friends and family and people on the margins; and--oh, yeah. Pray. Really hard.


Wednesday, August 2, 2017

MY LIFE IS ONE TOTAL DISCONNECT

In my trawlings across the internet, (health news, bra searches, clothing during chemo, hair loss, wigs, anti-inflammatory diets, Catholic memes, Catholic saints), I have accrued a disconnected series of links. They pop up each morning after prayer ( helphelphelp, should Pence be President?), and I will skip the misgendering item featuring the size of my organ and how yippee-skippee that will make my partner.

Here are some recent ones, each of which can cause a serious head-snap:

--Avoid Embarrassing Accidents vs Sexy Women's Underwear

--Senior Living vs Escape to the Tropics

--Hospital Beds for Home vs Hot Sex Every Night

--Fight Hair Loss vs Kentucky Sour Hats

--Best of the Breast vs Catholic Saints

I can't seem to get this straight, and my mind veers drunkenly from one self-image to another. Either I am one hot babe, or I am ready for a bed from Hospital Supplies. Either I've got thick, wavy hair, or I am bald as a coconut and need to order Rogaine.  Either my breasts will adore
a pushup bra, or I must read about St. Agnes who had hers cut off as part of her martyrdom.  Either I can hold my pee, or I should invest in an adult diaper with a shred of lace on it so I won't feel too downhearted. Either I can revisit my favorite topless beach in Guadeloupe, or I will look into Senior Beach Excursions in a wet suit and Cabinette.

Yikes! These are things your mother never told you, or anyone else for that matter--that you can be both/and, and not either/or, as the wise Richard Rohr so often reminds us.  This is what happens when you reach the feisty age of 71  You are a bundle of seeming contradictions, but in the end, they don't really abrade each other.  I carry all of my past selves within--sexy, tired, bald, with hair, wild girl, convert to Catholicism, reader of racy novels, peruser of Catholic theology, nature girl, attender at Eucharistic Adoration, and more.

And ain't it marvelous?  We don't need to be defined by one or two things anymore, but like a free-flying bird with many-colored feathers, we can soar into the air, reflect the sunlight, and take joy in our wild complexity.

Wednesday, July 12, 2017

FREE SPEECH IS NOT HATE SPEECH

Recently, an old high school friend shared a post on Facebook showing a Confederate flag (posted by one of her friends), questioning whether states should be allowed to fly this under the protection of the First Amendment. I believe she did this in a spirit of inquiry--to elicit people's opinions. The original source for this picture was adamant that the flag was not racist but was about pride in one's southern heritage.

As a woman with southern roots herself (a grandfather and an uncle both from Little Rock), I passionately disagree with this. 

I've had an interesting tour on the internet about what constitutes hate speech, and the divisions between that and free speech. It can get somewhat murky at times, but this is what I found.

1/ See an article in Huffpost, The Blog) (6/22/15) by Ben O'Keefe, a man of color, where he declares that the Confederate flag is "a symbol of hatred." He contends that the succession of eventually 11 states was primarily about the right to own slaves.  "As a person of color," he writes, "when I see the Confederate flag, I am filled with fear." He also cites Ta-Nehisi Coates' article in "The Atlantic" (Take Down the Confederate Flag Now, 6/18/15), that the flag is not about southern heritage but is about oppression. Coates directs us to the "Corner Stone Speech" by Alexander H. Stephens, Vice-President of the Confederacy (3/21/1861), and you will see that the Confederacy was founded on the belief "that the negro is not equal to the white man...", thus justifying the enslavement of millions of black people.

2/ In Texas, the Sons of the Confederacy wanted to have a special license issued showing their flag. The state refused. This went all the way to the Supreme Court where it was ruled, 5-4, that such licenses are not free speech. The court differentiated between government speech and private speech, where such licenses could be interpreted as Texas supporting the Confederacy and all that the flag means. (See "The Guardian," Scott Lemieux, 6/15/15).

3/ Then check out the recent inspiring speech by the Mayor of New Orleans, Mitch Landrieux, on the need to remove statues honoring Confederate heroes. (See https://www.youtube.com/watch?v=j81MkNgn.XuY.) He is a son of the South, and he knows the harm seeing such statues can do to people of color.

4/ After Dylan Roof's shooting of nine people of color at the AME church in South Carolina, the picture of Dylan holding a rifle in one hand and a Confederate flag in the other went viral, influencing the state to finally remove the flag from the capitol.  At the Washington National Cathedral there were two stained glass windows depicting the flag and southern heroes, Robert E. Lee and Stonewall Jackson. After the shooting, the Bishop had these removed immediately saying that he did not want to cause further harm to people of color.

5/ Here's a few more examples for those who still think the flag celebrates southern history and is not a symbol of oppression. Influenced by the shooting in South Carolina, on May 19, 2016 the House banned the flying of the Confederate flag at all VA cemeteries.  And these stores took any representations of the flag off their products: Target, Walmart, Amazon, eBay, Etsy, and Sears.  Their reasoning was that they did not want to offend or cause harm to their customers.

So, what's the upshot? Is flying the Confederate flag a question of free speech or hate speech? Certainly you can display it from your porch, your car window, in decals, and this qualifies as "free speech," though, as recent events in Arlington show--when a neighbor in a mostly white neighborhood flew this flag from his porch--his neighbors were disturbed and worried and went to talk cordially with him.  Eventually he took the offending symbol down. (Kay Lazar, "The Boston Globe," 3/6/17).  His neighbors experienced this as hate speech, even though technically it slides under the free speech category.

Allowing states to fly the Confederate flag means--if you extrapolate from the decision about the Texas license plates--that the government supports what the flag conveys.  This is official speech, not private free speech. But more to the point: this flag is an affront, an insult, a slap in the face, a declaration of privilege and white supremacy, and an implicit threat to people of color.

I was horrified to see this flag on my FB feed. It offended, upset me, and I worried that friends of mine who are people of color would also be offended and upset.  To me, this is no different from painting a Nazi swastica on a Synagogue or the home of a Jewish family. It is a threat, implying violence. And that's the definition of "hate speech" that "it attacks a person or group on the basis of attributes such as race, religion, ethnic origin, sexual orientation, disability, or gender." It "incites violence or prejudicial action"...or "intimidates a protected group..." (Legal definition of hate speech found in Wikepedia).

When I was 18, a freshman at Bates College, and dated a young man of color, I can assure you that when some creeps burned a cross on the lawn of my family home that I was "intimidated," frightened, and saw this as a clear warning to me: whites and blacks don't mix. Do not go out with a black man. (1964)

I hope we have made some progress since then, but at times I question this. Just look at the numbers of black men killed by police and at the proportion of men of color in prisons today in our country. The author Michelle Alexander, cited in Ta-Nehisi Coates' article, (Take Down The Flag, in "The Atlantic", 6/18/15), states that the mass incarceration of black men today is a modern form of Jim Crow.

We all need to work against the deep racism in our country. It flows through so many of us, myself included--a turgid, unseen river carrying lives, drowning dreams, and burying the futures of young people in hatred, prejudice, and lost
opportunities.  I believe the Confederate flag is not an agent of free speech, not should it be protected--in public--by the First Amendment. Times change, laws evolve, rulings change, and the framers of the First Amendment could not have anticipated the future we live in now.

I take my cue from the Jesuits, whom I love and admire, when they give this advice: When you consider your words and actions, ask yourselves--Does this create unity among people or divisions between people?

Monday, June 19, 2017

STOP PUSHING!

Here's my reflection for this week. It struck me--with some help from my Buddhist younger brother, from my favorite new book, The Subtle Art of Not Giving a F..k, and from my brother, Jesus--that I torment myself every time I resist my life, push back against sorrow, suffering, and things out of my control. Like:

--swollen ticks on my dog;
--my second accessory stomach;
--slow, erratic drivers;
--the fact that at 71 years I no longer have forever.

In the wonderful book cited above, the author writes: Wanting positive experience is itself a negative experience. And, paradoxically, the acceptance of one's negative experience is itself a positive experience."

I thoughtfully scratched my one-inch curly, apres chemo hair (uh, oh, another push back!) and wondered--how much energy do I waste resisting things I don't like in my life? And conversely, when I DON'T resist hard times, how much better is that for all of us?

I remember my surprising cancer diagnosis in the fall of 2015. Not fun. Scary, of course. But my attitude then was essentially: BRING IT ON, BABY! Do the two surgeries; give me the poison that will kill those damn, marauding cells; give me the Rx to help wobbly legs; and, oh, yeah, give me some legal dope to smoke for hard days. Though I admit to far preferring a good, crisp, cold Chardonnay (Toasted Head, are ya listening?) to vaping, which makes me cough.  The point is that by not pushing back against incoming suffering, worry, and pain, it actually made the whole experience easier on me, my husband and kids, and friends. Possibly my dog. 

I need to remember this when I am behind an impossible driver who is talking on a hand-held phone, texting, and petting his dog. All at the same time. I have to breathe deeply and feel some compassion for how crazed he is.

When my legs get wobbly again, just pop some Gabapentin and smoke a little weed. Read my fabulous, entertaining Jane Yellowrock series (by Faith Hunter) on my kindle and just relax, not complaining: I wish this had never happened to me. How could I get cancer? Me, who exercised regularly and actually ate OATMEAL for breakfast (instead of chocolate croissants)?

When I confront the fact that my daughter (who is still beautiful on the inside and once was quite glamorous) is now transitioning to the male gender, I think: "How cool is this. This is about him, not me. And the person I birthed and loved for so many years is still there. They have not gone away." And now I have two sons! Amazing.

When I bemoan my pooching-out stomach I catch myself and think, "At least you've got a stomach, babe. Remember that woman at Baystate undergoing chemo for her stomach cancer. She lost 75% of her stomach to surgery and can hardly eat
." Be grateful. Stop complaining. You are upright, breathing, laughing, making great food, loving up your honey, surrounded by friends and family, embedded in a faith community, held by God, and living in a place where the beauty of nature surrounds you every single moment of the day. Remember.




Thursday, May 25, 2017

YEARNING TO BE ILL?


If anyone had told me a year ago that there would be times when I wished I were still sick, I would have stared at them in dismay, fallen to my knees, laughed hysterically, then sobbed.

Are you f...ing KIDDING me?  Why would anyone still want to be hauling down to Baystate for weekly infusions, going to NETA for more weed (see earlier post about my wild confusion between ounces and grams, sigh), crashing on the couch, and drinking gallons of water per day to flush out my kidneys.

When I had my last infusion, I thought--I'll be doing the tango in the parking lot. I'll throw confetti out the car windows. I'll go to La Strada and buy a pair of 4" black stiletto heels to celebrate. Who cares if I can't walk in them?

I had a friend on FB who commented that when her treatments for breast cancer ended, she kind of missed them, "Because I felt we were fighting my disease, we were doing something!"  I didn't get it then, but I do now.

The toddler part of me still wants my beloved husband to bring me tea (milk and sugar, please) at the drop of a hat; to make me a thin, lean hamburger which I could digest; to pour me a small glass of white wine (who cares if the protocol says no alcohol when getting infusions!); and to spread a fuzzy throw over my legs on cold nights.

I don't need that any more, but I sometimes want it--that feeling of being held in someone else's care, in loving, tender hands, surrounded by wishes for my comfort and good health.

I think that once you have had cancer, you ever quite lose the desire to be cared for and nurtured. Because who the hell knows what the future holds?  I remember when my step-mom was in a near-fatal accident years ago and was in ICU in Baystate. As we entered her room she was wailing, "I want my Mommy, I want my Mommy!" (Note to self: never bring a ten year-old daughter to visit distraught grandma in hospital. Ever.)

I get it. I want my mommy at times, also my dad. When I was at the beginning of the cancer journey and talking with my adult son, Ben, on the phone, I burst into tears and wailed, "I want my Dad. I wish he were still here!"

If we had great parents--and I did--then I'm not sure we ever stop missing them completely. If we are lucky, we have partners and friends who can wrap us in this kind of comfort. And if we are REALLY lucky, we believe in an all-merciful, grace-filled, loving, abundant God who holds us in her/his hands, always and forever.




Wednesday, April 19, 2017

ARE WE THERE YET???

Those of us who have had the amazing gift and grace to be parents will remember car trips with our kids. We once had a ginormous van with bucket seats, individual lights, heat, and air-conditioning controls front and back seats--perfect for long trips. But despite the luxury I remember the dreaded phrase, "Are we THERE yet? How much longer? I have to pee. I need a new action figure, I'm hungry."

I would hand out books to read, snack bars, and sometimes throw little riddles written on scraps of paper rolled up in an old film container to my kids in the back. Wonderful days. Tiring days. Days when you shoveled everyone into bed, hoping you hadn't damaged their tiny psyches for life and longing for the oblivion of bed.

But now I am in the "Recovery" stage from cancer; from 3 separate kinds (in case you are interested), 2 cancer surgeries (in case you want to know,) and many months of chemo--carbo/taxol (in case you are interested).  Things are better, no question about it. I am not kvetching about where I am now. Far from it. I am grateful for: the marvelous medical treatment I received; the support of friends, family, and faith community; the love of my dog; the beauty outside our decks; God's love; and the fact that I am upright, walking around, and still cooking and praying, two of my favorite activities. Outside of sex and talking with my honey. 

But here's the thing--I am an impatient broad, and I want it to be OVER already. I am so done with fatigue, wobbly legs, foggy brain, strange hair, and the sense that my life is still on hold until I know if the cancer is really gone.  I feel like someone who has begun a conversation on the phone when suddenly a voice interrupts, "Can you please hold?" I am on hold, waiting for someone to pick up the phone and resume the conversation. I realize I am mixing my metaphors here, but I have chemo brain.  I have a free Hall Pass for the next, oh, two years, maybe five.

I had lunch recently with a close woman friend who is recovering from major surgery who complained, "I can't believe I still have to take naps. I get so tired. I can't even grocery shop." I get it.

We both want to be beyond the recovery stage. We want our old lives back, whatever that means. I'd like to take up running again, but suspect that won't happen. I'd like to think about writing a book about cancer and tarting up my blog, but I don't have the spoons for it yet. (Remember: www.butyoudontlooksick.com)  My friend would like to go for long walks on the bike path, make luscious dinners, sing in the church choir, and generally have way more energy and strength.

Me too.  I am like my kids from long ago, waiting restlessly in the back seat, kicking my heels and sucking up the dregs of
my Micky D's pepsi, asking, "Are we there yet? When will we be THERE?"