I Can’t Un-See The Monkey

I can’t un-see the monkey. The one that sits behind my head playing with what sounds like some sort of heavy game tiles or dice in a felted box. Every once in a while the monkey reaches forward and touches the sheet that covers my shoulder. Or do I imagine this too? Then someone walks by…I think.

They say when one of your senses is lost the others fill in. I haven’t really lost any senses so I can give no explanation for the weird things going on in my brain during therapy. It’s just my head is strapped down, but I can even peak through the mask if I want. I guess my hearing is trying to make sense of the sounds. But a monkey with a felted Parcheesi box?? Really?

Under the cover of night we fly down the turnpike along with about 5 other cars in what could easily be some sort of apocalyptic escape from NJ movie scene. We are nearly tired of talking about it but the dissonance of no traffic in a til-now traffic-filled life compels us to comment on it for the entire 35 minute trip. Off at Exit 9 and onto Route 18. Every toll booth is open yet somehow the only two other cars exiting have spazzed out and had to stop because they were headed into the same one. Odd. Empty Route 18, empty Easton Avenue. Four treatments in, I hobble into the building of my own accord because no one but patients are allowed in due to Corona. Fletcher waits in the car. No falling down so far. I change, then wait, while I hear lots of laughter coming from the techs. It makes me happy that they are happy.

They joyfully welcome me, put me on the skinny table. They congratulate me on today’s news of no bone mets. They sweep my hair out of the way and put my mask on, tethering me tightly to the table. I thanked them again last night for being smart, for coming to work, for helping to save my life. I said this without crying and was quite pleased with myself.

They check my tattoos, line me up by shifting the sheet below me. My instruction is to lay heavy. They check and double check my position and come back and adjust multiple times. Here we go.

The monkey is messing with the game tiles. Then the bed shutters a tiny bit, maybe moves. Someone brushes the sheet at my shoulder. Maybe. Then a beep at my other shoulder. A doorbell sounds. The distant sound of a diesel brake? A hydraulic whoosh.

Now there is a light show for me. Spots of fuchsia dance across my brain for about 10 seconds; the lights culminate at the top of my head in a fading borealis. This would be pleasant and beautiful but unfortunately it is accompanied by the smell of mild ammonia culminating in wet dog smell. Finally the sound and faded light of a single distant firecracker signals completion of the first third of treatment.  The treatment of my spinal column is less entertaining than my brain, with only the sounds of diesel brakes, the whoosh, a sputtering sound and the final distant firecracker.

My techs assure me that these sensations, while experienced by many patients, are mine alone – the techs say they see, hear & smell nothing. My central nervous system’s reaction to the therapy.

Light shows and fireworks seem like an appropriate way to celebrate killing breast cancer cells in my spinal fluid. Thank you brain! And I guess some ammonia for the cleanup crew.

The monkey is gone as they release my head, robe me, fetch my shoes, glasses and face mask, and wish me well until we meet again tomorrow night.

Meantime, I’ll have an MRI today and treatment, then I’ll see my youngsters again tonight. My monkey and I will enjoy the light show and endure the cleanup crew.

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*What the heck is with Jethro Tull? Never been a fan but a google search for an image of an actual monkey playing a board game found this so of course I had to use it. This monkey is clearly more sophisticated than the one I’ve conjured.
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Skating Away, Skating Away, Skating Away, On the Thin Ice of a New Day

“Skating Away, Skating Away, Skating Away, On the Thin Ice of a New Day.”  It’s not that I need a theme for each phase of this. It’s just that things resonate sometimes.

I was the buffalo (see May 4, 2014). Then I showed my mettle (see January 9, 2019). And now each day feels like maybe I’ll falter or maybe I’ll triumph: the thin ice of a new day.

But it’s holding. A victory on an insurance issue on Tuesday, a pain-free spinal tap yesterday in NYC to grab live cells to evaluate DNA for mutations, and proton treatment starts tomorrow. 

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Unbelievable. Mid-week, mid-day on the FDR. NY stayed out of our way.

Cancer in the age of Corona. Surreal.

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It’s 1:56 a.m. Me and My Steroids Are Wide Awake

It’s 1:56 a.m. Me and my steroids are wide awake, so I might as well see what comes out. I brought my computer into the bedroom for this just circumstance.

Here are things I’ve been thinking but not writing because, ….. well, most of it is bad, bad, bad:

I felt better on Thursday because I’d walked Ralphie almost a mile. I found the neuropathy had progressed to above my knees and suddenly my upper and lower legs once again spoke the same language. The subtle flailing (an oxymoron) was gone and they moved me along just fine. But the neuropathy is now all the way up my legs and butt. More disease progression. The next day I tried to do yoga, which can be the lamest of all activities if you want it to be, which I did want. But I could not balance, nearly rolled an ankle and found after 8 minutes I could do no more and was so discouraged. Yet the next day I think my knees were happy they’d been completely bent. So Child’s pose is on tomorrow’s agenda.

When I hung up on Friday afternoon from talking to nurse Karolyn she said, OK so you’re good for the weekend, we’ll talk next week about these other things and what I find out about the spinal tap. I thought I was OK, but I still had 6 days to wait and by that night I realized that I am still in the process of actually dying until they start the therapy on Thursday.  I was stupid enough to actually say to Fletcher something like, If I make it. What Do You Mean, he said in a voice I’ve never heard as he sat across from me with a look on his face I’ve never seen that demanded a response so I kept saying the stupid thing, which was that I felt like I am losing it more each day and might not make it until Thursday. I actually thought that at the time but what a stupid thing to say. I am an idiot.

Here are other stupid things I thought but thankfully did not say: Last week, when I cut Fletcher’s hair, would that be the last time I do that? I cleaned the bathroom on Saturday and cut my toe nails short today because you can’t die with either of those things unaddressed.  Will scones be the last thing I baked? Now Fletcher knows how to make dal because I coached him from a chair.

The pandemic I was so happy would keep traffic down is turning out to be a real dick. Instead of distracting me it has just piled on and on, making me think that if my treatment gets pushed back this condition will continue to progress and I will just continue to die.

So that’s where my head has been for the past few days. But I decided this afternoon that even though the untreated prognosis for this condition is bad, I’m probably not going to die before I start treatment, even if it were to get pushed back. I think Karolyn would have thought to mention it. Again, I am an idiot and have decided that for the next 3 days I just need to meditate for a few hours each day and binge watch TV for the rest of the time. My meditation focus should probably be self-compassion, in acknowledgement that I should stop calling myself an idiot. Maybe I’ll make a good playlist for back and forth to treatment. I’ve learned that I am not as patient as I thought myself to be.

I imagine my math PhDs working on my treatment plan and hope they are terrifically, stereotypically nerdy social distancers. Will my techs have childcare issues once the schools close on Monday? Will the woman who invoked Jesus as she Chlorox-wiped the pen she tried to hand me (I’d brought my own) be there on Thursday to wipe everything down with Jesus and bleach? I’ve decided it will be better to sit in the fucking wheel chair if I need to than to fall down or make Fletcher hold me up. He’s already holding me up so much as it is.

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Weird Days All Around

Weird days all around, between my own medical challenges and the world’s, i.e. Covid-19 pandemic. Plus even weirder through the sleepless lens of the massive steroids I am now on. But I promised another annoyingly optimistic post so I have to deliver. 

No doubt a diagnosis of leptomeningeal disease is dire. But the optimistic news you won’t find on the internet yet is that Memorial Sloan Kettering Cancer Center just completed a clinical trial for a modification of standard proton therapy that was so successful they are now using the modified therapy and rushing to publish the results of the trial. That is the therapy I’m starting next week. But I am getting ahead of myself. 

Last week was my most recent Sloan ultimate experience. This is where, when you are just about to despair, Sloan doctors, nurses and staff swoop in and fix it. I can’t say it enough: in my over 6 years as a Sloan patient I still don’t know how they do it. 

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Within one week of the spine MRI revealing this new complication, I’d gotten additional scans; met with my medical oncologist, my neurologic oncologist, and my radiation oncologist; had other related issues explained, like what additional scans I’ll need for other decisions such as whether my systemic meds will change; I have a clear plan for treatment. A single call to one of my three amazing nurses ended up expediting my simulation appointment for proton therapy, moving it up a week and a half.

That simulation yesterday was a piece of cake. Unfortunately I’d spent a good deal of anxiety currency on it, which wasn’t needed. Honestly it was like I imagine a spa treatment would be (never been). While I listened to James Taylor and Jessie Colin Young, a nice woman pressed a piece of flexible wet mesh that will harden into a mask against my face (like a massage through a warm towel), while two others marked my body with felt pens and tattoos in what my brain interpreted as a sort of reiki-inspired shamanistic ritual. I’ll have 10 treatments over 2 weeks, targeting my spinal fluid and everywhere it travels through my spinal column and brain. The side effects will include fatigue, skin irritation, hair loss*, swallowing problems maybe, and possible longer term minor cognitive impacts to short term memory. But I’ll be symptom free and alive for at least a while longer. And I don’t even have to worry about traffic to and from treatment because I timed this perfectly to coincide with a pandemic! How’s that for looking on the bright side!

I did have a very disturbing bump in the road yesterday while at my appointment. There were two times when I was unable to walk and nearly fell down. They tried to get me into a wheelchair but I refused. Honestly it freaked me out completely to even think of sitting in that chair: Wait, so now I’ve lost the ability to walk!? I cried, it passed, and I was fine. In hindsight I think it was not a progression of symptoms so much as the fact that I attempted to continue walking through one of my attacks whereas I usually just stop and hold onto something and ride it out. But, note to self, it was a wake up call that I better work on resiliency planning to better be able to deal with what may be in my future. Sorry, I know that wasn’t very optimist thing to say!

So to say I am Sloan’s biggest cheerleader is an understatement. When my first medical oncologist Dr. Latif left, I feared the worst. Then I got Dr. Ligresti, who was awesome. When she stopped seeing patients at the office I go to, I got Dr. Rizk. The biggest complaint I had against her was that she wasn’t Dr. Ligresti, which I admit wasn’t fair. I’d only actually seen her once before this new turn of events. Turns out she is also amazing, and has experience with and has done research on this condition. Then there is my neurologic oncologist Dr. Gavrilovic who monitored an unrelated brain meningioma with me for a few years. He was as perplexed as everyone when I returned to consult him about my recent symptoms. He is kind and smart, and the best advocate for prioritizing treatment for me, his patient with a year’s-worth of weird neurologic symptoms just discovered to be related to a condition with a prognosis measured in months. Although I wish Dr. Schupak were still my radiation oncologist, I now have a team lead by Dr Yamada whom I have yet to meet, overseeing experts in proton beam radiation, backed of course by the math PhDs who are creating my treatment plan as I write this.

Last night Fletcher and I were talking about how amazing medical diagnosis and treatment is. That physicists and engineers and bioscientists and surgeons can use surgery, chemicals, and radiation to cure people. I struggled yesterday during simulation to not “go there,” that is, back to the state of mind I clearly recall during my prior radiation sessions where it was all I could do to not cry through the sessions for being so thankful smart people were working to save my life (see September 5, 2014). Hurray hard science! 

Our conversation wandered into the territory of less-hard science, such as natural medicines and other things less well-documented and less “hard” cures. Then on, of course, to the nebulous mind-body connection realm and how hard it will be to prove that we are capable to making our own bodies inhospitable places for disease to take hold. And also to get to the point where such things are routinely part of treatment, considering there’s no money to be made. But over my years as a cancer patient I’ve seen some slight changes. Sloan now has integrative medicine. All my docs are fine with acupuncture, massive mushroom and green tea concentrate supplementation without even a sideways look (after treatment to avoid interference). So that’s a start. And maybe all that clean living and meditation I’ve been up to recently is playing a role exactly right now at this very minute.

That’s enough optimistic rambling for today. I am now compelled to go eat something by the same steroids that will make whatever I eat taste bad. I declare that due to steroids, for the next few weeks, I will not be optimistic about sleeping or eating! (except ice cream, which somehow defies steroids’ evil way of making everything taste like oil.)

* Reminder & weird fact: This is not my first head-shaving rodeo. The day I first shaved my head to take control of chemo-related hair loss was April 6, 2014. I expect to have to do the same for radiation-related hair loss on about April 4, 2020, almost exactly 6 years later. I’ll have to plan a trip to the beach that day to once again memorialize the event (see April 9, 2014). 

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I’m Feeling the Need to Write Some Therapeutic Words

I’m feeling the need to write some therapeutic words. Re-reading some of my blog posts, it suddenly dawns on me how annoyingly optimistic I am.  I tend to start out with some dread concern, then talk myself right into things being fine. I didn’t really even realize I do it, but I guess maybe that’s why it’s therapeutic.  For my mind anyway – my body not so much, it turns out. For things have taken a turn for the worst.* 

You know that breast cancer that I ridiculed as an underachiever (see January 15, 2019), as a dolt (see September 6, 2014), as a coward, and stupid, an arrogant conniver (see March 28, 2014)? It turns out sneaky bastard is a more accurate moniker. It is now in my spinal fluid. Those breast cancer cells are backstroking through the tender crevices of my brain. They are running the rapids of my spine on the flow of my slick bodily fluids. They are docking on my nerve endings, throwing parties big enough to dam up the flow. This is a very bad, bad situation because they are now protected from the cancer meds I am on by my blood-brain-barrier, that tight layer of endothelial cells meant to protect the motherboard. Cancer cells in my spinal fluid, swinging from my nerves, even swelling my brain, have finally been determined to be the cause of the year-long mystery symptoms that have been making me miserable.

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Me & Whinny, and on color film!

So here is today’s annoyingly optimistic story. It unfolds at the barn where you met Little Bo Peep, my dream pony who dragged me (see January 21, 2020). But a year or two had gone by, and my world then revolved around Whinny, a tall, lean palomino pony. I was leading Whinny out of her stall and she stepped on the head of a kitten and crushed it. But the kitten was still alive. I froze, not knowing what to do.

In swooped Big Cheryl, called me an idiot, then promptly drowned the kitten in a bucket of water. 

Big Cheryl** was about 17 and had some sort of informal responsibility for running the barn. She was buck-toothed and wore coke-bottle-bottom glasses that made her eyes gigantic. Zeppelin and Creedence be damned, she unapologetically played classical Spanish guitar like a mother fuckin’ riot, as they say. She guffawed with abandon, but also gave the impression that she could and would kick the shit out of you if you crossed her. Big Cheryl would threaten to kill you if you touched her blind horse, Golden Ruler. We were all afraid of her.

I can still see her tanned, sinewy forearms holding that Picasso-faced kitten under water, and recall wondering whether I was in for some punishment. But that was the end of it. We both just shared a sad moment for the kitten.

I’ve always looked back on that day as a positive one, that story as inspirational. Who else but me could twist that story into an inspirational life lesson about the courage of decisive action in the face of trauma? The quick-thinking mercy delivered by an unapologetically unique young woman; the tug of guilt and regret, the warmth of forgiveness, felt by my young self. The happiness of not getting my ass kicked. Something like that. The story of the day I killed a kitten – what a great day! Pretty twisted, eh? So if you think cancer will kill the optimist in me you are wrong.

*At least until my next post, already in the works, which I assure you is also not lacking in optimism, and for good reason. Sorry/not sorry.

** She was not big, only older, and needed a way to be distinguished from Little Sheryl.

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Let Go or Be Dragged

Let go or be dragged.

I keep coming back to that ancient Zen proverb, mostly in relation to the daily challenges of trying to get back into shape. Should I let go of this goal? Or should I continue to be dragged through the now daily extreme fatigue and unrelenting soreness?

But I have a long history of holding on.

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Art by Ruth Sanderson, goldenwoodstudios.com

When I was eight years old I loved a pony named Little Bo Peep. Banish all mental images of the mild and dainty, frocked shepherdess which her name invokes, for Bo Peep was a battery of potential energy cleverly disguised as a thick-furred, thigh-high bundle of cuteness. Her little hooves went clip-pity-clop. Her muzzle fit in the hollow of my child-sized palm. Her inch long lashes lined beguiling eyes, one brown, the other half blue and half brown.  To brush Bo Peep’s dense winter fur only stirred the static electricity that made dust cling to it more tightly. When we played hide and seek I would climb into her manger and she would wibble my head with her lips. Later I’d find hardened horse slobber in my hair. She was my world.

If you don’t know ponies, you might not know that they can be, shall we say, difficult, and Bo Peep was no exception. On more than one occasion she schooled me, and my lesson was this: even though we are well matched in size, you are not nearly skilled enough to ride me. My lesson to her was this: I will be dragged rather than let go.

Bo Peep was inclined to do exactly as she pleased on occasion, which included grabbing her bit and taking off, skinny little Linda’s tugging be damned. There was no question that I could stay on her. The question was whether and when she would stop. I clearly recall the shouts of my sister, Gail, fading in the distance as Bo Peep galloped at full speed and forged a new trail on an old trail that had been devoured by sticker bushes. I tried with all my wimpy strength to pull her to a stop, as stickers ripped at my arms and legs. Finally I wrapped the reins around my hands and, once the sticker bushes gave way a bit, I jumped off her, my hands still tightly bound. The dragging was relatively short before she came to a halt, and my take on that episode was that I’d won. I also earned some street cred with Gail, my witness.

Another time I found myself once again moving involuntarily at an out-of-control gallop, this time through a wide open landscape, toward a busy road. My companions were powerless to intervene as I became a speck in the distance. I used the same drop and drag technique (which I think of every time someone says drag and drop in computer-speak) and was applauded by the onlookers, both because I was a ballsy eight year old, and because I had survived.

 

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Me on Little Bo Peep, circa 1968.

Little Bo Peep’s owner sold her before I was strong enough to stop her the normal way or outgrow her. But during the time she was in my life, letting go was never an option. And I fearlessly got back on every time.

So, should I let go or continue to be dragged?

I can’t clean my house. I can’t cook every night. I can’t work, earn money. I can’t swim a mile, run five, or bike twenty. I can’t save the world. That’s a lot of stuff that I could do, that I can’t do now. I might need to let some of this stuff go because that’s a lot of dragging.

I’ve previously encountered the suggestion that I had to create a “new normal,” and frankly it pisses me off.  I liked my old normal, thank you very much. But as I was putting the finishing touches on this piece (read: waiting for Gail to emerge from the wormhole with a good photo of Bo Peep), and not really knowing where I was going with the ending, I coincidentally read a piece in the NY Times that lead me to this article:

https://journals.lww.com/oncology-times/Fulltext/2019/10200/Patient_Handout__The_New_Normal_for_Now.8.aspx

The concept of defining a “new normal for now” is one that I can get behind. 

The first time I underwent treatment, I have to say it was about two years before I was fully back to where I was before my diagnosis, and a few years after that until I was an even better version of myself. So when I put things in perspective, I really have no business thinking that one year out from the discovery of my metastasis I’d be anywhere near where I was prior. 

Thinking about creating a “new normal for now” is going to work because it acknowledges that my situation will indeed continue to evolve. It encourages me to summon that fearless, gritty, eight year old I was, and be willing to be dragged occasionally and temporarily. It is hopeful, and that’s what I need right now.

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So…. Nothing To Write About

So…. nothing to write about except for this colossal day, filled with terribly ordinary, extraordinary things.  Things that suddenly inspire me to write pages about each. This day follows days filled with thinking I might never write again, because I was never going to be inspired because Lyrica has killed my ability to recognize a thought worth contemplating much less writing about. 

“Let’s not blame absolutely everything on the Lyrica,” said Dr Shaikh. Fair enough. But let’s blame what we can on the Lyrica because if we don’t we’ll have to blame it on my writing ability or lack thereof.  

I posted something I wrote about Ralphie. I wrote it to prove to myself that I actually can still write, if only I can find an inspiring little pig.  Ralphie, my muse…. and then on the following day everything is suddenly demanding to be written about, like this: 

My fragile immune system kept me from sharing the burden during my mother’s C. difficile adventure. I was away for a few days, lying in a swimming pool and hiking to water falls, while my sister changed poopy adult diapers.  While she spent 3 consecutive weekends in the ER with our mother, I went out to dinner yet again. While I went for a bike ride, she ran down the infectious disease doctor and tongue-lashed her into discharging Mom. She slept on our mother’s floor, she wiped down every surface with the special wipes I ordered (it was literally all I could do), only to tell me the next morning the big D started again. Of course this is concurrent with caring for our mother’s wound, and dealing with her gum-ache and recent case of gout. All this has confirmed a long held suspicion that my sister has no breaking point.

IMG_3212A gesture Mom learned on her 91st birthday.  It sums up her past few weeks.

And this: Cameron, with injured knee, used the 8-foot long branch on my porch, the one I intended to cut down for a walking stick when/if I become an old woman, to hobble to the car for her first visit with her new primary doctor.  Fletcher & I took bets on whether she would also use it to get from the car into the doctor’s office, thereby looking like the shaman that she is. 

And this: My treatment today was a piece of cake. I’m getting used to dropping my drawers on command. Then I had my final visit with Jan, the radiation oncology practice nurse, who discharged me saying, “You have enough people here looking after you.” True that. We talked for a few minutes about the tragic loss of Dr. Schupak, which I can’t talk about without tearing up.  Not only because of the loss of someone so skilled. Not only because of the fact that while she was treating patients she was herself a patient, unbeknownst to us.  But mostly because she was so very kind and reassuring and I wonder if she knew how much it meant to me.

And this: Laila and I were again chatting and dining, this time excellent Afghan food (apparently she’s not sick of me yet), while Fletcher took Cameron to the orthopedist who pronounced her lyme-riddled yet again, I learned by text.  I warned Fletcher via reply text to be prepared for the wrath of Cameron when they get back in the car, but they were apparently preoccupied by transporting bodily fluids drawn from her knee to a lab just minutes before it closed. 

And this: Julia wants to know what train to take. Ooops. I’d forgotten that she is also coming home tonight. Initially I had forbidden the overlap with Cameron being home because I refuse to again schlep that cat litter into my bedroom since they both refuse to host it in their rooms while they are home. “Are you saying I can’t see my sister? I could tolerate cat litter for one night until Cameron leaves,” said Julia, who has apparently grown into a complete adult since the last time I saw her. She can both host cat litter and wants to see her sister? Wait a minute! Is there a glitch in this here matrix?

And this is only my own family.  I can do more. How about a story about a couple seeking to rent an apartment that only allows small dogs, trading their sweet but neurotic and gigantic dog named Loki for their friend’s smaller dog (say, one the size of a small pig) just for the interview.  What could go wrong?

How about the thought that every time you dig in the garden you might be maiming a creature or destroying its home. We realized this when, as we savaged our out-of-control front garden, taking the lawnmower to it, the dirt began moving on its own and a precious, gray, silken creature emerged and scampered about, among hundreds of crickets who’d also just been rudely evicted. The vole looked around, bewildered by the changes to its above-ground world, before it slipped back underground. Add the Terror of Voles, triggered by home demolition, to the Sadness of Birds when you trim back their favorite bush. And the Anger of Hummingbirds when you pull out their favorite flowers. The sweet william were entangled with honeysuckle and virginia creeper – there was no saving them. Our hummingbird hovered by the window where the flowers used to be for a surprisingly long minute staring at us in disbelief, and, I swear, gave us the finger before flying away. Who knew gardening could be so emotional.

OK, enough! I said, that will do, Pig!

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Let’s Focus on Ralphie, Shall We?

Let’s focus on Ralphie, shall we? He won’t mind. 

First, imagine a small pig. He’s the same general shape, but a little thinner and a lot hairier. The same beady eyes and the same lovability, minus the hooves.  I shift my weight on the bed and notice by the tiny cracking of a beady eye that I have disturbed him. But only momentarily. His legs are so short that he sniffs his own feet when he sleeps.  His legs are so short that he gets The Crud on his belly from the wilderness outside. Doc says his undercarriage must be bathed daily with the $special$ shampoo to keep this microbial-inspired sort of manginess at bay.  Fat chance of that.  I can barely bathe myself some days. So I’m shooting for every other day, which by experience I know slips to every three days, then once a week, then The Crud returns.  

Suddenly he cries out, obviously being provoked by turkeys or murdered by thunder. He is paralyzed except for his feet, which twitch and spasm, and his voice box, which alternates between yelping and imitating Curly snoring.

Almost every night while we are eating, Ralphie stubbornly stands splay-footed, staring at us with those beady eyes from across the room. Only copious amounts of yelling or sweet talk will get him to budge. I gave him a piece of salmon from my plate tonight, something I never do. A bit later the staring started and when I told him to stop acting freaky and go lay down, he actually listened to me, likely in return for the bit of salmon. Noted.

Sometimes, when I am feeling self-indulgent, I wake Ralphie from a deep sleep. I do it to see the beady pig eyes swept clear of the fur that usually hides them.  To see the fur plastered to the side of his head in some approximation of an up-do.  To see the fur that usually hangs on either side of his nose, now on one side straight up, and on the other straight down. He looks ridiculous and endearing, but mostly confused.

Other times, also when I am feeling self-indulgent, as I lay on the couch I wake Ralphie from a deep sleep and, after appreciating his beady eyes and his up-do, I lug him on top of me (like a tiny, weighted, swine blanket) for a hug.  This distresses him greatly at first, but then he tolerates it, then he relaxes and, I like to think, enjoys the hugging.  He enjoys it until Fletcher comes in and says, “What are you doing to him? Dogs don’t like to be hugged!” Then he struggles to free himself, having just been told he should. Fletcher should just zip it and let me hug my dog. 

That’ll do pig.

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There is a Multi-Ring Circus in My Brain.

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There is a multi-ring circus in my brain.

In the Big Top, Breathing is a ringmaster who performs perpetually, whether anyone is in the stands surrendering their awareness or not. It’s not long before the side shows draw me away.

In this tent, memories of when Thurman Munson(1) lost his head.  There are only a few of us present, but we have a good laugh.

In the next tent, the freak show of the future is featured, in which I am in an emergency room (with Ralphie because it is too hot to leave him in the car) where we have rushed to tend to Fletcher who was hit by a car while stubbornly riding his bike to the shore.  Ah, the future. It never disappoints. In my future they let dogs in hospitals. 

It’s back to the Big Top, where Breathing is performing daring feats of….nope, still just breathing. Feel it in your nostrils, feel it in your belly, then wander off again.

Between circus rings, I wonder how I am able to sit in the sun with a sweatshirt on when it is 87 degrees. As long as I am meditating I don’t seem to feel the heat. Weird. Fletcher says he wants a new pillow that is “robust,” which strikes me as an odd description for a pillow.  I do like the word ‘robust’ though, and vow to use it in a sentence today.

“‘Grandma did you do your kegels today?’ I shout.”  These words come to me as a brilliant first line of a short story I discovered I need to write at just this very moment – the only moment that exists, so I should focus on it and be aware of it, my meditation guide(2) tells me.  He tells me I need to befriend my pain at this moment, the only moment that exists, and become intimate with it. He tells me this in a voice that sounds like a chill Woody Allen. Imagine Woody saying the word “intimate” and try not to get creeped out.

In the next ring, the beautiful horse from the farm down the street is cantering around and around and around.  It is dappled gray and fat.  A beautiful woman swings and splits and stands upon it, yet its movement is constant, constant, constant. The rhythm of its canter synchs with my breathing. I wander back over to the Big Top.

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I bring awareness to my breathing and manage to keep it there for more than a nanosecond. Perhaps I should spend more time in the Big Top. My guide insists I am doing great and that this is how it’s supposed to work – no matter what bizarre things go on in my head, no matter who arrives on my brain porch, whether my thoughts include pain or cancer or when I’m going to clean the sand out of my car, I just keep bringing my awareness back to my breathing. Then I notice that the cotton candy machine is in the Big Top so I bring my awareness to that as well.

I refer here to Thurman Munson the stuffed NY Yankees mascot doll, not the crackerjack Yankees catcher that was its namesake, although both had tragic endings.
 2 Jon Kabat-Zinn is a great meditation guide. I’m using this: Mindfulness Meditation for Pain Relief – Guided Practices for Reclaiming Your Body and Your Life
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Cancer Staggered Up My Brain Porch

Cancer staggered up my brain porch during meditation today. I made a decision; not a “quick decision” because cancer was pathetically slow.  It was just some cells trying to glom together and get inside my head.  Unlike death, which I turned away because I didn’t want him rattling around in there and stinking things up (see 3/17/19 post), I let cancer in, knowing that no one in there was going to engage with it, and that it would soon be sitting alone in a corner, crying.  Which is what it deserves really.  Who does it think it is? Who does it think I am? It actually doesn’t even think at all, those pathetic little cells.

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Credit: JOMFP – Some other person’s metastatic lobular breast cancer cells

Cancer’s arrival at my brain porch interrupted some important thoughts.  You might say, What was she doing thinking important thoughts during meditation? Isn’t the idea to keep your mind completely clear?  Well that is true, but I am also in the middle of reading about the placebo effect and how brain neuroplasticity and suggestibility can combine in a powerful way to support healing.   I haven’t yet learned how to actually make that happen, just that it can happen, and I know meditation is a key part so I was jumping the gun. 

I was thinking about pain from post herpetic neuralgia and fibromyalgia. I was affirming that yes, I understand how neuroplasticity works and yes, I am open to suggestion and yes, although I am a science-purist I truly believe that science doesn’t know everything, and science often disses what it doesn’t know, and maybe science will confirm* in 20 years that you can think yourself well, and I don’t want to wait 20 years so I’m going to do it now, thank you very much. 

Cancer struggled up my steps and reminded me that in focusing on these nerve-related issues I am ignoring the elephant in the room – the cancer that might kill me.  Well my answer to that is this: the nerve pain is what is front and center right now. It is bringing me down and to deal with the cancer I need to be up, not down. 

All pain signaling comes from the brain. Today I was focusing my healing energy on telling my brain to calm down. Ssshhhh – nothing to see here….Shingles is gone so, nerves, you can stand down. My activity level is coming back so, nerves, muscles, fascia, you can relax and serve my needs again. I look at it as practice for curing myself of cancer. Those little lonely cells, crying in a corner, won’t stand a chance.

*Obviously this won’t happen until more funding for science comes from sources interested in healing not in making $$$. So it will probably be more than 20 years….

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