Viruses and Assholes

Assholes. There I said it. You who were too selfish to even comprehend that viruses beg for crowds to strengthen them. The more the better, and you just couldn’t stay put for a couple of weeks to save humanity. 3,000 people in the United States are dead as a result of COVID19, as of today March 30, 2020, or so we’re told. If there are too few people to take hostage the virus will become less deadly because a virus, like a parasite, won’t kill off all of its potential hosts. To survive with less the virus weakens. So with fewer to infect so it can remain alive only far less deadly. Much unlike stupid metastatic cancer, which will eventually kill its hosts.

But such assholes probably won’t die. The ones who will die are the aged and the infirm.

I fall into the category of “infirm.”

I have one of the diseases metastatic cancer along with diabetes, AIDS, and other lovely human killers have repressed the immune systems of the human beings who walk around with those assholes. Those jerks who couldn’t stay home just for the sake of their fellow Americans to avoid such an imminently high death toll.

And the slow burning down of our Economy is their fault, too by the way.

Having metastatic breast cancer means jumping from one therapy to the next until they no longer work. Right now the very Immunosuppressive chemotherapeutic medications ingested into my body to hunt down cancer cells and save me, could kill me. Good luck to me for trying to find a lab willing to draw my blood for the four major blood tests I need to know if the Verzenio and aromatase inhibitors are working and if I’m suffering from liver or kidney dysfunction. Oh and how bad my white blood cell count really is right now to see just how open my system is to this corona virus. I’m not too happy to have been home now going into the fifth week.

I had two telemedicine visits last week with my palliative oncologist and my medical oncologist. My palliative oncologists and I are just in the “getting to know you” stage of our relationship. He’s a great guy, and I hope he lasts in the role longer than the previous four I’ve had at Stanford. I don’t think palliative medicine is still taken as seriously as it should be for those with terminal and chronic illnesses. But what a great time to educate yourselves if you’re at home like I have been.

Dr. B and I had a laugh or two on our call. He’s not as techno savvy as he will be when this is all said and done. I hope for his sake and mine he stays well. He’s in the “aged” category and I am in the “infirm” category so we run similar risks although mine’s a bit worse than his but he was in clinic doing our call. I need some ascites fluid drained off – the new protocol I’m on doesn’t seem to be getting rid of it as we’d hoped. I have a hard time breathing and I can’t button my jeans and the rest of me looks thin. It’s making my back ache where I had the L5 stress fracture in my lower back. That was two months ago when I had my CT scan. It’s showed a slow accumulation of fluid and it needs out. We will try to find a place to have it done but chances are I’ll have to go to the cancer clinic – alone. No use anyone else getting sick if I do.

But I’ll do what I have to to keep myself alive and well as long as I can. Every time Craig and our friend S leave the house they are the only ones wearing masks and gloves. They assure me the looks they get are like two men about to commit a crime. When the opposite is true – those assholes who refuse to take this situation as seriously as it should be are the thieves and crooks. The thieves of lives and the crooks of humanity.

Every time they come home from the grocery store, the post office, or the pharmacy and the occasional trip to the hardware store – we procure most of what’s needed online and the rest we try to buy from local small businesses when and if at all possible – they remove their clothes in the garage to be washed later and shower in our downstairs bathroom. They keep me safe.

I do get out for my walks and for some much needed gardening, too.

Our friend has been staying with us for the past three weeks and knows once he leaves the house he cannot come back due to the high incidence of the virus in the Bay Area and specifically to his neighborhood. He is the opposite of an asshole: the Yiddish word mensch comes to mind. He’s here to help complete what’s necessary to bring our house up to move in ready. It turns out our dream home wasn’t as move in ready as we were led to believe.

So people reading my blog aren’t likely in the part of the Venn diagram labeled assholes. And there’s a few who should stay home or face a ventilator and take a hospital bed away from someone who couldn’t help it, like a nursing home resident. If it was your mom or grandmother I doubt you’d think – well they already had their lives…fill in your own blanks. I know Americans. They love their freedom, but freedom at what cost? The cost is detrimental this time. And to those who least can afford a virus as deadly as COVID19. I don’t care if the conspiracy theorists are right and it was unleashed by the Chinese on an uprising in Wuhan province. I don’t care if it came from Mars. I’m a native New Yorker and I know the venom from the fangs of the rabid individualists. It’s deadly too.

But hear my plea. Don’t, for the love of those you love, take risks on our behalf. Don’t be an asshole. Assume no one can fight off a very strong virus. And don’t assume you don’t have it right now. You might. The massive campaign to politicize this virus is only now becoming apparent. Shame on those assholes, every last one of them. But here I sit, happy in my bath of green tea, macha powder, frankincense, and Epsom salts. I’m lucky to have telemedicine, immunotherapy, people who love me, and a house far from the madding crowds. And if you’ve got metastatic cancer and need to get away for a couple of days drive in and stay. My house is open to you.

But the rest of you – don’t be an asshole. Stay home, please, because this too shall pass and all will be well after the dust settles. I just hope I’m still here to see that first sunrise on that first day we can all breathe in the same air and heave a collective sigh.

PS The photo is of three donkeys who live up the road from us. They look rather unbothered by this fiasco and I take solace in their existence every day they come down by the fence when I am walking by. They see me and trot quickly down to say hello to me no matter where all three of them are at that moment. Craig said they don’t do that when he walks by without me. They come to the fence and shake their manes at me as though they’re inviting me to hang with them for a while. Maybe next walk I will, too. They’re asses not assholes. 😜

And then there’s my cancer…

We never know how high we are
Until we are asked to rise
And then if we are true to form
Our statures touch the skies

  • Emily Dickinson from poem 1176

Happiness: an illusive inner state to those of us with terminal illnesses. Each happy moment rolls into the next, yet we drive through life on a road with potholes and speed bumps as a reminder that we better slow down and enjoy it while we have this chance. To be sure, each and every waking morning opens the curtains on a new chance to grab at the brass ring, that for us is coveted yet covered in Vaseline. The ring slips from our hand as we ride by. The horse we ride runs free with us on its back, hand filled with the shadow of oil from our attempt at forgetting for a single day that this might very well be our last.

As finding our dream house should make for a feeling of joy at the real chance of building a fantasy foundation for our new beginning, I still well up with tears when I’m alone. Amazingly we have experienced much joy, having moved from the angry, traffic snarled, polluted San Jose to the clean, kind, and friendly cradle of the Sierra mountain foothills. Put that together with finding a home to put down roots permanently and you’d think – what does she have to complain about? Believe me, I’m not complaining one iota. It’s simply that the bittersweetness of biting into such a red delicious apple knowing it’s laced with poison that will kill me sooner, or I hope, later, covers my heart with a dark vail of sadness. I may not be here to enjoy the fruits of the seeds we planted and have cared for such a long time now.

We tended to our garden most recently with the difficulty of the move itself and over many years seeing my beloved finally pull out of his depression. So much to look forward to, so much love in this very moment in time to be grateful for.

Then there’s my cancer.

Making plans to switch oncology teams, making sure we’re in as clean of a house with the very best infrastructure in which we can invest – things like low to no VOC paints and bamboo wood floors – we’ve found an opportunity to live by the anti-cancer book. Complete with new friendships and a very cancer-supportive community this is certainly what appears as one of the four noble truths: nirvana. I’m finding a certain lack of suffering here. To me, who’s always lived by the old cliche the grass is always greener and finding some level of happiness wherever I am, this time of my life comes as something of a surprise to me.

And then there’s my cancer.

I’m reaching out for an exacting of equanimity here. A balance of sadness and happiness. Where suffering becomes the background or the shadow and joy comes forward to the forefront and into the light. It’s so hard. That’s all the language I can use to look for a way to achieve balance of taking care of my physical and emotional heath while not focusing on it. I can liken it to taking a photo of a sunset when you’ve got a person standing in front of the camera lens. I can see the colors blazing in the distance but there’s a big dark presence preventing me from taking in all that beauty.

Because there’s the cancer right in the way.

I hide it well. Sometimes my beloved asks if something is wrong or if I’m angry with him. No honey I’m not. I’m happier with our relationship than any other time in our 12+ years together or any romantic relationship I’ve been in my entire life.

It’s just the cancer getting in my way again.

Here’s a poem I wrote a few weeks ago as my weekly blog bonus. I love the theme of it – it’s tangentially akin to the theme of this blog post. On that note here’s:

Cold Love

Would I be if born a snake
Or bee, or clam, or fish?
Leg less, bloodless, and cold blooded
A thing without future or past.
Without arms to hold us
How do they establish a child’s
First love? Without sounds
Without syllables, no words to wound
With no hands to slap cheeks for the tears?
No false devotion to express and
No arms to commit forged emotion.
Did god know we needed belief?
Maybe words and hands on the end of arms
Beat us to the punch?

Whose guilty fingers purge my throat
To say nothing of love’s remorse.
Outstretched, sewn, and quilted
Receiving dubious mistrust
And soiled gifts of healing.
Arms holding light to beseech me
The creatures run back to the wooded wild.
Any path dark and clouded
Covered with leaves compacted
By nights grand mothers who sneak
By and slither away with our soundless cries
Morays silently drift in shallows,
The pecks of grounded wild turkeys,
The opinions of poisonous black widows
All mothers in the dark shadows of sea, of land, and of twine
Wait to hold their young somehow.
They give what’s needed and then take away
Without a word to convey their warnings.
Compliantly we wait at the forest edge
Huddled alone and cold until
Tonight tar black and frightening
Clears away in the dim light of morning.

Connections: The impact of terminal illness on relationships

Who wants to die without seeing everyone you’d want to see and saying all the things you want to say to the most precious gifts life has to offer: of friends you make along the “long and winding road,” to quote Lennon and McCartney. I’d venture to guess very few people, if anyone, would pass up such an auspicious opportunity. Or would they?

Receiving a terminal illness diagnosis, like metastatic cancer, can cut the human heart out like a serial killer with a hunting knife. Stunned we watch in horror as in his hand your life quickly fades to black as he shows your heart to you, blood through his fingers right before the light in your eyes burns out, extinguished forever.

Why do I imagine such a vividly gruesome metaphor for what should be a series of happy reunions?

A day in a life

Ahhhh. My bath time. The time of each day when I reflect on my self care and I give myself a physical and mental check up. Some time to meditate, listen to an audio book or music or both. Or do a Zentangle focused drawing tile. If you’re not a visual artist like me but want to learn to draw, try the Zentangle methodology. It’s great for concentration and for relaxation and it truly improved my confidence in my ability to create hand drawn artwork. I’m even proud of a few of my pieces!

Stumbling into my peaceful bath ritual came The C. Innocent as the slightly autistic driven snow, he offered,”If you need to travel to say goodbye to some old friends don’t worry, I will take care of your travel costs,” offered C last night as I sat in a hot bath. I sat with tears falling into a bathtub of steaming water. Such a thoughtful gift brought about a tearful response. He tore at my heart while giving with his own. He left me alone shutting the door, quietly walking away, feeling upset and confused.

Why did I cry instead of showing my gratitude? His generosity shattered me into a hundred little shards of painful fragments. Pieces of sharp broken promises of a future. Another day in my life, post-terminal illness diagnosis. I’d heretofore avoided the subject of visiting old friends. There are people I frequently daydream of seeing again, who pop into my minds eye along witht the feeling that I might not see them befor I die.

Relative mortality survival time with statistics - but I try not to follow numbers since they mean nothing to anyone’s individual cancer.

*See stage 4, that’s my survival chance beyond five years but I could never play by the rules so these numbers are mere poo flung out to scare me from Dr. Mary’s monkey cage. It’s been four years and two months since my diagnosis and likely much longer since I’ve had my chance to begin with before it went raising my body like a pirate.

On our way home

I hesitated due to the ravages of chemotgerapy to visit with an old friend who came from Paris with his 22 year old son to the Bay Area. He and I last saw one another 12 years ago when he dropped me at the train station in a small town down in the southern mountain region of France. We were not too happy with eachother at the time. But maturity and sense took over in the span between then and now. Meeting him for an hour before he had to check in I was not nervous but excited to see him.

Funny how cancer gave me a strange confidence in knowing it didn’t matter how good I looked. It didn’t matter what I wore, because neither of us will remember our relative fashion sensibilities as the highlight of our brief yet meaningful encounter. We will recall how it felt to hug one another and to feel the connection of a true friend and the kind kind of love that’s without beginning or end.

Moved to feel the connections we make along the way with those who travel along life’s path with us, authentic and deeply touched and indelibly changed by that very beautiful place only we know while joined with another spirit. Through the years we expand on our experiences together and fold them in on our consciousness. Our expression then takes on a higher power, two squared if you will. We better ourselves because of an instinct to find other souls in a sea of possibility. This I believe is where our instincts must take over.

I trust my instincts more than ever because sometimes that in and of itself is what was changed by another person. The innstinct infuses us with life and light and love. For what is love but the purest form of human instinct.

Ticket to Ride

Try as I could I couldn’t but cry for being happy to have seen him… knowing it may be the last time. But perhaps not so until we meet again…I am here and as long as I am alive there is hope. With hope comes possibility. And I have hope there will come a day when we can hug again.

Yet we can only live in this moment. It’s all anyone can do. And I ripped the bandaid off of my fear of the next time I see an old friend, perhaps being the last time we may see eachother. Maybe C’s right and it’s time to get traveling and live again to see those people who have meant so much to me over the years, and to the person I’ve become. Because whether or not they know it, I would never have the strength of spirit to dig up the tenacity required to go the distance with metastatic cancer.

Never underestimate how you’re loved. It’s more than you think and never too late to find out.