Tuesday, May 16, 2017

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.

Monday, March 20, 2017

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.

Friday, February 10, 2017

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,
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?


Tuesday, January 24, 2017

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


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 
in my way

Tuesday, September 20, 2016


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!

Monday, September 19, 2016

Expect Nothing

I've been thinking about this Alice Walker poem all day, one of my favorites. I will find out tomorrow how I'm doing regarding the presence of cancer in my body and/or brain. I feel good, but assume nothing. Actually, that's a lie. This time around I'm just assuming there is bad news, which is what I'm getting used to. I have no idea what the plan would be if it is and TDM-1 is a bust for me. I try to stay in reality - so sure, I hope for the best, but I don't want to be surprised if it's the worst. I think if I could get to the neutral, having no expectations at all, then there wouldn't be a surfeit of disappointment and a good surprise would be really good. Alice Walker says this much better than I do.

Expect Nothing, by Alice Walker

Expect nothing. Live frugally
On surprise.
Become a stranger
To need of pity
Or, if compassion be freely
Given out
Take only enough
Stop short of urge to plead
Then purge away the need.

Wish for nothing larger
Than your own small heart
Or greater than a star;
Tame wild disappointment
With caress unmoved and cold
Make of it a parka
For your soul.

Discover the reason why
So tiny human midget
Exists at all
So scared unwise
But expect nothing. Live frugally
On surprise.

Friday, August 19, 2016


Hey Paula, thanks for encouraging me to write and hinting that no blog posts can be worrisome!

Inertia has set in. Three infusions into a new chemo, I can't really judge what the chronic side effects are. After the last infusion, I know that fatigue - crushing fatigue that does not dissipate with sleep or rest - may be an ongoing issue. Some days I think I need a little part time job to give some structure to my days, some days I nap and then sleep twelve more hours that night. It's hard to think about working on those days. Plus, the last two times I attempted to work for a living cancer shit storms unfolded and I had to back off. So, these have made me a little superstitious about trying again, and I'm not a superstitious person in general.

I don't have small children to care for, and as much I try to insinuate myself into my 18- and 20-year-olds' lives, they are not buying into it. So being an at-home-mom isn't really taking up my days this summer. The work of making the cancer yoga class happen is pretty well done. It's happening and it is primarily in the hands of the nurse supervisor and my yoga teacher. This is good, really good, but that project seems done and mostly out of my hands (aside from attending and participating, of course). I have an editorial to write for the end of September to bring a little of my jarring brand of reality to the dreaded Breast Cancer Awareness Month. There's always cooking and cleaning to do, and there's plenty of that; but come on, that doesn't complete one's need to be useful and productive as we women are well aware of. I have lots of free time to go and visit long distance friends in the northwest, but, well, I don't drive long distances myself any more, as my brain has melted enough to make my vision bad and my concentration worse.

You get the picture.

Complain, complain, whine, whine... But this is my reality and soon my friends who are teachers will go back to work, and my core peeps with whom I have a sweet little social life will go away, at least on the weekdays which is when I'm generally on my own. So... if y'all have any great ideas for a little getting-out-of-the-house cash flow... I'm ready to hear them!

Anyhow, my cancer status (the original purpose of starting this blog) is, drumroll.... UNKNOWN! I'm in that third of the three months between scans (CT for the body, MRI for the brain) that is sort of a no man's land. The initial post-scan crisis and what we do about it is done - drugs switched, another fun gamma knife, etc. - and there's only the dread anticipation of what's coming and the thready hope that the news will actually be good or even tolerable. In a lot less words (not my forte) - SCANXIETY. A break from the brain tumors would be nice, even if it's only the relief of a couple of months hiatus from thinking about it. The CT will also give us an update on the lung lesion that had grown between scans last time.

That's really all I know right now. There aren't any dramatic symptoms telling me anything but I've learned that shit can happen without symptoms. If this post seems depressing at all please know it is actually not. I'm mostly content; I'm in relatively good health; my body feels good, if not my brain; and I know that in some ways I'm very lucky.

Maybe the above is enough. In our culture of movers, shakers, and strivers, maybe what my life is whittled down to is enough. Maybe I actually have everything I need and as much as I or any of us should want. Maybe, to steal lyrics from Blind Pilot, it's just this.

Let all things be as they should
Let my heart just drift like wood
And will I break or will I bow
if I cannot let it go?

Feel that sun just hold you right
leave you burning in the night
Feel that wind lap up your soul
if you cannot let it go
If I cannot let it go.