The Annual Public Rant

http://www.dailyastorian.com/Local_News/20170929/breast-cancer-think-more-than-pink

Random Stuff and a Health Update

1. Things I Did While Procrastinating Writing

The white stovetop is really, really clean. Aside: DON'T get a white stovetop. While we saved a bunch of money buying the display model, frankly it's FILTHY 99.5% of the time.  I also did the dishes, cleaned the sinks and counters, and put dishes away. It's fleeting, but satisfying. Now here I am, nothing left I want to do except leave and do the shopping, avoiding the computer at all costs. (Hey, don't worry, everything's a mess again already.)



2.  Random Quotes I've Encountered

Over the last few weeks, I keep hearing or seeing quotes that scream (or whisper, or sing) into my ears and settle in my head nonetheless. So I'm just going to share them with you. And maybe blab about them.

I'm reading Sherman Alexie's new memoir, "You Don't Have to Say You Love Me." Last night I read the following as Alexie described his mother's death from lung cancer:

                    

                     Fuck you, Cancer, fuck you, Cemetery Dancer,

                     I’m going to learn or invent a war anthem—

                    A song that will obliterate you when you attack.

                    Note by note, my song will kill you, atom by atom.

                    My song will protect cousins, nieces, nephews, sisters

                    And brothers. My song will protect everybody’s fathers

                    And mothers. Fuck you, fuck you, fuck you, Cancer,

                    For making me wish that I could write a song

                    Powerful enough to banish you. Fuck you, God

                    Of Cancer, for killing my mother, for splitting her

                    Into many halves, for turning her blood and body

                    Into host. Fuck you, Small-Cell Cancer. Fuck you,

                    Mr. Death, for making me so grateful to be alive—

                    For making me count and write odes to each breath.

Jerry Garcia: "They always love it when I don't die." Is this great or what? (Except that he died.) I'm not a huge Dead fan but I loved the Amazon Prime six-episode series "Long Strange Trip." I don't know, I just found so much strange humor and joy in this sardonic, simple statement. For us, when people hear we have stage IV, they expect us to die! And die pretty soon. I know of people who died within a couple of months, and some who are still going at twenty years. The lucky among us don't die for the time being. We lucky ones live our lives pretty normally most of the time, to the point it would be hard to tell we have a terminal disease. I for one am happy to be in this position, save for the bald spots on top of my head, the gray bags under my red, irritated eyes. But someday, like Jerry, we'll die of or with our disease. In his case it was too many drugs, a bad heart, bla bla bla. In ours, it'll be the random shitty luck of getting cancer. We love it when we don't die! Our families and friends love it when we don't die! Even our followers on Twitter or Instagram or whatever - unless they're trolls - LOVE IT WHEN WE DON'T DIE! 

Jocular Fellow (JF) holding court at the barber shop the other day: He'd had some medical testing to establish the identity of the little spots in his lungs. Spoiler - it wasn't cancer. Another waiting client (all chairs were full and there were about four of us waiting - between the barbers, the clients in chairs, and the "waiters," me included, the place was on a crazy roll of storytelling, teasing, and loud rock music) asked JF if the offending spots were "pre-cancer." JF went into punchline mode. I swear, there might as well have been a drumroll: "OF COURSE IT'S PRE-CANCER! EVERYTHING IS PRE-CANCER! UNLESS IT'S CANCER!" I nodded my head; the whole place broke up. All I can say is it was a pretty fun wait for a haircut.

In the same Grateful Dead series, a roadie said something so profound (to me, anyway). I am 100% certain he didn't say it to be profound. On second thought he was probably tripping, as they all were so much of the time, so maybe it was an incredibly deep thought. He was talking to the interviewer about how no one was really in charge; there was no leader, and that's how the Dead liked it. Then he said, "The situation is the boss." The situation is the boss. I'm guessing other cancer peeps can relate. We can live our lives - go to yoga; go fishing on the lake; run and swim; bike 20 miles before chemo appointment; host a family reunion; leave a husband or boyfriend; fight with our kids and have a great time with our kids; get on a plane and explore a new place... I could go on and on but I'll spare you. You get it. Cancer, our situation, IS the boss. It can change our plans on a dime, cause you to sleep for 14 hours when you had intended to get a whole lot of shit done during the latter six of those hours (though you secretly revel in those delicious 14 hours of sleep).

3.  A Very Belated Health Update

I last saw both of my oncologists (medical and radiation) in June. I could not think of a thing to say here afterwards. I'm already halfway through the three months I have before the next scans and appointments. Not a health update, but I will never be able to go and see the medical oncologist, Dr. Vuky (who is highly intelligent and knowledgeable, and a breast cancer expert) without experiencing a shit ton of grief because my oncologist of five years moved away. I'll never be OK not seeing him.

That out of the way, my radiation oncologist (Dr. Kee) has really grown on me. He's brilliant and blunt, patient and precise. He explains things so thoroughly it ends up being me that wants to get out of there, instead of the typical doctor experience where you feel shortchanged as you're shuffled to the check out counter to make your next appointment.

Bottom line is my body below the head continues to show NED (No Evidence of Disease). Yea! My brain has a few tiny lesions floating around. We are still not going to do anything about them right now. Some have grown a millimeter or so; Dr. Kee calls this growth statistically insignificant and deems the scan to show stability. Yea! So, that's where I'm at and I can't complain, though I do anyway.

4. One More Fuck You Cancer

The husband of a close friend has leukemia. This shit is unreal. Nobody deserves this in their lives. So,
                                                                                     Fuck you,

                    Mr. Death, for making me so grateful to be alive—

                    For making me count and write odes to each breath.

                    

                 

Pissed (and I Don’t Mean Drunk)

Still life: angry iv bruise with tattoos

MaryAnne, Doris Ann, Mandi, Chris, Jody, Jill, Anna, Rachel, Rachael, Laurie, Karen, Suzanne, Debbie, Angie, Becky, Beth, Susan, Kathleen, Sylvia, Ellen, Nancy, Terry, Mary, Connie, Bette, Sharon, Maria… I could go on. These beautiful women and many more died in the last year. They were all a part of my large online support group for people with metastatic breast cancer. Just in my support group. My cancer compadres and I are mourning waves of death this spring. My short list does not begin to touch the numbers of the dead, to the tune of 113 every damn day.

Meanwhile, those of us living with MBC get to distract ourselves with the possibility of losing our human right to medical care because of our pre-existing condition which, I guess must be our faults, right?   

Don’t be fooled Drumpians, about how We the Pre-existing will be able to access benefits. I suppose if having metastatic cancer correlated with being part of the 1% then we’d have benefits galore, because we’d be able to afford them. But in the Drumpf plan, that “access” will be through high risk (read: very expensive) pools with ginormous deductibles and quite possibly lifetime insurance payment caps. People with the expensive diseases, like me (again, maybe my own damn fault?), might be shit-out-of-luck. The upshot will be death and more death. So many will lack the money to pay for procedures, visits, and exhorbitantly priced drugs. Our surviving spouses, parents, children will be left to sort out the bankruptcies, collection agencies, loss of homes. I’m not being particularly dramatic. This shit happens because an inhumane system in which healthcare is a privilege and not a human right (read anything by Paul Farmer; you’ll learn a lot) is on the cusp of becoming exponentially more inhumane. Does Drumpf worry about affording medical care for himself? Not so much.

I’m just pissed off. And I’m pissed off about being pissed off. Having a terminal disease makes a gal want to live day to day in some semblance of peace, contentment, and gratitude, along with the fear and stress that comes with being incurable. Grace, that is. We who are alive because we are inusred for our expensive medical care can no longer live in grace. In this new and awful era of Trump - a psychopathic, selfish, narcissistic, sexually harassing, child raping child-man, tweeting his displeasure to the world (tweeting!) like a 7th grade bully, peace in the every day is not possible.

I miss President Obama. I miss first lady Michelle Obama. I miss feeling proud that the first family was an example of integrity and intelligence.

Meanwhile, back at the ranch: I have scans to schedule and appointments with medical and radiation oncologists in early June, so we’ll see what changes and what stays the same. I’m really hoping to stay on my current chemo, because, well, because it’s “easy.” I really hope my brain lesions are stable or gone, so I can avoid another gamma knife session and more holes drilled into my head. I really hope, as I do every three months, that cancer hasn’t overtaken my body and brain and that there is nothing left to try. I feel both fairly confident and fairly terrified, as we all do when in the treat/scan/repeat pattern that tends to define our lives. Time is what we’re after, what we hope for.

What Kind of Fuckery is This?

What kind of fuckery is this? It’s what Amy Winehouse sang so gorgeously in “Me and Mr. Jones.” “WHAT KIND OF FUCKERY IS THIS?” I love curses I’ve never heard before, especially when they fit a situation so well. The fuckery: a gal in her prime bitch-slapped with a cancer diagnosis a month after doing her best triathlon ever, in the best shape of her life. Then Fuckery 2.0: metastatic diagnosis nine months (NINE MONTHS!) after finishing treatment. Most of you probably know all this, but that’s it in a nutshell if you didn’t. I just had to use my new word a few times and what better venue?

OK, that was satisfying but I have other stuff to say That isn’t just playing with my new curse words. I was reading an Anne Lamott essay last night, and three words stood out: “Grace bats last.” Here’s the context:

"So why, in this fever dream, do I still believe that we will be okay; that Grace bats last, that mercy from within us and around us will be more than enough to help us come through? God thought we would like wattles, divorce, warfare, snakes, and acne? I could go on and on — global warming, urinary tract infections?"

I’m not religious myself; in fact I might be on the negative side of the number line on this one. Less than zero. I don’t judge, unless someone hides behind religious values and is cruel, or dishonest, or racist, or misogynistic, or cheats, or or or….. We all know ‘em. There are people I love who are deeply religious. One of them, though I've never met her, is the writer Anne Lamott (after all, she does curse on occasion): “Mercy means that we soften ever so slightly, so that we don’t have to condemn others for being total shits, although they may be that.”

When I think about my own spirituality, it’s like a t-shirt that I love, that is not super attractive, that’s grayish from never separating my laundry. Mostly, it’s trying to live in grace, which Lamott has written about so often. For me there’s no god in grace. Grace isn’t perfection or ease. Grace is the act of living every day within the conflict between anger/grief/devastation, and peace/ contentment/acceptance. As I’ve written before, grace IS the conflict. Grace is figuring out over time and struggle how to live with it. It’s a gray area.

Which is what I was going to write about. My body has no visible cancer right now. Yea! My brain has five tiny lesions that aren’t a big enough deal right now to treat. Yea…..? This is a "great report" from both of my brilliant docs. Grace is my interior screaming, “What Kind of Fuckery is This?” while trying to be content with walking around with five cancerous lesions, however small and asymptomatic.

Grace is going for a run on a beautiful day, followed by yoga on my porch in the sun, and feeling incredibly healthy, while housing five brain lesions rent-free.

Grace is finding the news is good enough (good enough for who it’s for, as we say at my house) to buy a plane ticket.  

Grace is knitting while getting IV chemo, confident I would finish the sweater.

Grace is the lucky charm I wear to chemo and doctors’ appointments.

Grace is spending as much time as I want cooking, which I love. It's sleeping as much as I want, while worrying I'm wasting too much time sleeping.

It’s enjoying making my friends a group birthday cake and being nervous about birthdays in general, simultaneously.

It’s signing up for a 5K running event, hoping I won’t have wasted the money if the shit hits the fan and I am unable to do it.

I guess it's being alive.

Past / Present

“Community means that we have a place where we belong, no matter who we are.”

~ Hillary Clinton

This comes from a handwritten  journal of quotes bequeathed to me by the husband of a friend who died two days before my birthday in 2012.. It is so precious to me; I loved (and will always love) her dearly. Her gentle nature, care for the planet, love of animals, and supreme kindness, are always with me. But, I’m still my cranky self; I think I should write a “positive” post full of gratitude and grace and hope. Brie would have known how to embed these in whatever she had to say, no matter how critical of and distressed by she felt about the powers that be. The quotes in italics in this post are from her journal.

I’ve lost my mantra. I’m hoping it’s only temporary. You know, the one I’m always quoting? “Expect nothing. Live frugally on surprise.” Bit of a distance from most mantras I’ve seen, but has felt apt for me for a long time. Many of us thought 2016 was a really hard year, distressing for so many reasons - medical/personal/emotional/political. I’ve heard and read this over and over again about 2016. The political is personal, medical, and emotional. The overarching spectre of Drumpf is now made real. Like an uncontrolled wildfire, it’s destroying everything in its path.

“...State briefly the ideas, ideals, or hopes, the energy sources, the kinds of security, for which you would kill a child. Name please, the children you would be willing to kill.”     

~ Wendell Berry

Betsy DeVos was confirmed to the Department of Education this week. Every public school child will suffer the consequences of the appointment of a billionaire heiress who has maybe never set foot in a public school. I’m not sure what will survive DeVos. I can’t help but wonder what Brie would think about all this, would have thought about the last year. What has happened in our country would have gravely injured her soul.

“Modern life requires an appreciation for the complexity and interconnectedness of people and other living things, if we hope to maintain both the planet and our democratic institutions.”

~ Deborah Meier

My friend was over having soup with me the other day. Her observation/fear that “ruling” by executive order, as Drumpf is, is how dictatorships rise to power. She was born and raised in Germany, a generation post-Holocaust, and she would know.

My brain is confused by the coexistence within it of an all-encompassing global and national depression, as well as the sadness that can at times accompany everyday life at home and in community (the passing of a beloved friend’s beloved dog). And of course, there’s the boat I contend with in which I ride out the tumultuous, unpredictable, unforecasted storm of cancer life with so many friends and strangers.

If access to health care is considered a human right, who is considered human enough to have that right?”

~ Dr. Paul Farmer

Poem for the week:

how do you stagger there

to a bewildered crossing of your finish line

perhaps so much like a metaphorical marathon?

you might be in pain,

exhausted,

disoriented,

ecstatic

all at once

half marathon but can't find marathon pics

what if you think, wait!

this is a mistake! i’m not finished!

this is my 20-mile mark

i still have the most challenging,

most satisfying last 6.2 to go

the part for which the human body

is not designed

why am i covered in a crackling silver blanket

so warm for all its lightness, its texture of paper?

why am i being led aside

to such a dark and quiet place?

caregivers

therapy

therapy

Yup. Been four months since last post. Along with everything else I've become, add inconsistent, a procrastinator, and an organized person who likes structure and schedules now structure and schedule free (and with nothing to organize!).

1. Rent

 Jon and I went to Portland to see Broadway tour of the musical Rent. It was awe-inspiring and beautiful and sad. We both sat crying through the second act. If you’re not familiar with Rent, it tells the story of an exuberant family of friends and lovers living illegally in an industrial loft in New York City, while AIDS is ravaging their community and the world.

2. Eyes

This might seem like a whine, but my eyes SUCK! I’m told I have “dry eye,” and that my medications cause it. (My nose - another faucet, due to my chemo drug.) They itch, they’re red, they

I picture myself like this.

run like faucets, which doesn’t seem dry but apparently that’s the body trying to compensate. I’ve used every drop known to personkind, I even had my tear ducts “plugged,” which helps some. I think the situation is as good as it’s going to get. Also, I wear prescription glasses for the first time in my life, at age 53. When I was little I wished I wore glasses.  

In the scheme of things, I’m super “healthy:” no radiologic evidence of disease in my body; the ability to practice yoga, and

And this
Me and my eyes in tree pose.

go running if I feel like it; no pain. But the annoyance of the eyes can be indescribable. Living daily and nightly with this and for many, much worse annoyances - knowing we

And this.

are not going to heal, knowing that overflowing facial orifices and/or coughing, shortness of breath, vertigo, nausea, vomiting, headaches, diarrhea, and worse - is how metsters live in the minutia  of day to day life. Oh, and the two pesky little brain mets I’m carrying around right now - no biggie, we’re just going to keep an eye on them. It’s all relative, which brings me to my next chapter.

3. Relative

If, five years ago, you’d told me “...two tiny brain tumors; we’ll watch them and see what they do…,” the drama and terror I felt might have exploded said brain. I was told this right before Christmas and frankly it felt like pretty good news.  It’s crazy how tolerance changes. It’s surreal - the changing definitions of good news and bad. At least my body is clear of visible cancer; at least the tumors aren’t making me sick right now. The scale of things in my weak and tired brain has literally and figuratively changed. My cognitive issues from radiation to my brain beginning in June of 2015 (and probably not ending) have worsened. Even Jon notices how out there and incapable of certain things I am. I don’t drive out of town any more; I veer around while walking on sidewalks; I can’t remember what you just told me, or what I said I was going to do; and maybe most sadly I have trouble reading and concentrating. As I wrote in one morning’s “5-minute journaling sessions” (a habit I was trying to cultivate at which I am currently failing), IS THIS SUPPOSED TO TEACH ME SOMETHING I REALLY NEEDED TO KNOW?

4. Voldemort

I’m scared, as are many of my metster friends, about the election of He Who Shall Not Be Named. Repeal of the Affordable Care Act may include putting lifetime spending caps on all of our insurance plans, whether ACA plans or not. Everyone may also not qualify for insurance with pre-existing conditions. I and many more have already passed lifetime spending caps by getting cancer, and duh, incurable cancer is kind of a pre-existing condition. Add just these two items, to the fact that my family’s awesome insurance (I’m one very lucky cancer patient - all relative, right?) comes from a federally funded U.S. Department of Education grant. My husband runs our county’s federal program, which helps kids in poverty get to college and beyond. If programs in Dept. of Ed. are eliminated, or hell, if the Dept. of Ed. is eliminated, our family and many others would be screwed, not to mention all the students that have been helped and inspired by this War on Poverty program.

5. Poem

Dissolving

a sand dune

disappearing grain

by grain in wind

and pounding waves

wet leaves transforming into slick mulch

thickening the ground

unrecognizable now as the life giving force

they were

(though mulch gives life in its own way)

a cliffside receding as rocks fall

roots unearthed by a raging storm

i too am disappearing 
transforming

receding

dissolving

in my way

NED / NFRED!

I expect(ed) nothing.
I live(d) frugally in surprise.

And I found out today that I am NED! No Evidence of Disease! There are a couple of expressions in my support group for scan reports. One is "dancing with NED," and the other is "dating the STABLE boy." I like to say NRED: no radiologic evidence of disease. But today I say I'm dancing with Fred. NFRED! NO FUCKING RADIOLOGIC EVIDENCE OF DISEASE! Anywhere!

Didn't think I was ever going to catch a break!