beauty, ILD, Life in General, lung damage

The Third Act

If there’s one thing I’ve always been able to count on it’s that I have more to do. More to create, to live, to experience. And so, when you find yourself presented with the option of time running out, of possibilities thinning and horizons growing hazy, it comes as a surprise.

And adjustments must be made. Almost two years ago, my husband had open heart surgery, it was scary, especially the complications, nerves were cut and injured during the procedure resulting in neuropathy, constant pain created by bundles of nerves that, unable to reconnect, shot out in bundles, like roots searching for water, only to remain exposed and crackling, electric lines severed but live.

Then came covid. We both made it through a bad bout, but two months later, Joseph was having trouble breathing. An ER visit ended in an eleven day stay while doctors tried everything to calm his pneumonia, to open his lungs. We were sent home with oxygen machines and tangles of tubes. A few weeks later, he went downhill again, and back we went.

Three times now, we have opened our doors to emergency personnel, I’ve followed the ambulance to the ER, days have been spent on breathing machines with various treatments, different doctors trying to find a reason, an answer, a solution.

And then, when he was in the third time, and we thought it would be the best time for me to visit our daughter in Santa Cruz, as he was well taken care of, I got a phone call from him.

Our younger daughter was at the hospital with him, which was strange because it was a weekday, workday for her. He started, with softness and love in his voice, to tell me that he had been visited by a different doctor, one whose job it was to deliver bad news.

They had done all they could, there was no curing what he has. It could be five years, maximum, or it could be any time. I put the phone on speaker so my daughter could hear.  My husband reassured me constantly, concerned only for my well being. My youngest is a rock, she actually explained as best she had understood and made us all laugh. She’s remarkable that way. My older daughter and I abandoned the hike we were headed for and instead went to a beach where no one would know her so that we could walk and be alone. Tears came with shudders, she hugged me, we walked and breathed and saw beauty, I swayed with the impact of what we had learned, knowing all the while that Joseph and I would face this too with grace and courage.

I flew home as soon as possible and went straight to the hospital. We cried some, tried to understand what was happening and break it down, but the reality was this: His lungs, probably damaged since he was a child growing up poor in Los Angeles, had been ravaged by mold, rat droppings, LA air, you name it, and the covid had kicked it up. My husband, who never smoked or did any drugs, had only about an eighth of his lung capacity working. There is no cancer, it is called ILD, Interstitial Lung Disease.

And the third act begins. Of course we do not accept that this is a final or an absolute. All his life people have told Jospeh that he cannot do this or that, he would not succeed, it was impossible, and yet again and again he has. In many ways he has been my hero because of exactly that.

Most likely, Joseph will be on oxygen for the rest of his life, a machine that breathes, creating extra oxygen for him, connects by a long plastic tube. At night he wears another mask and uses another machine that expands his lungs to give him extra oxygen. He can only walk short distances before he’s completely winded. He will never fly again because of pressure changes. The medications he takes for his heart and now his lungs sometimes fight each other, he is seldom even comfortable.

And so we have learned to laugh, to try to find the things that bring us pleasure. Friends in Seattle loaned us their fabulous home overlooking the Olympic mountains so we would have a place to find acceptance and make the seismic shifts to settle into our new life.

There are so many things that we can do, we laugh often, we have a made a foray or two into the world, conscious of battery power and available plugs. We took a short trip to the Seattle Asian Art Museum, where we borrowed a wheelchair and for the first time, I pushed him around, him holding the portable air compressor in his lap. The wheelchair was too small, almost  child sized, and his knees were high, and when he tried to get up he was sort of stuck in the seat. We laughed a lot.

When we were leaving, the most gorgeous group of children, I’d say first grade, were playing on the lawn. Joseph was walking slowly, pulling the oxygen machine along behind him the tube wrapped behind his ears and flowing into his nose. One of the children was watching him, she came closer and stared up at him, maybe a foot away, fascinated and undeterred by adult pretension. I smiled and said, “It’s oxygen, it’s helping him breathe.”

This remarkable little person said, “I know that humans need oxygen, but why does he need that?”

We tried to explain, but the battery was running out and Joseph was exhausted, so we slowly made our way to the car. Once we were in and plugged into the car charger we both said, “That kid will be a doctor or a scientist, for sure.”

In truth I had been fascinated by the unabashed curiosity and openness. Yes, I thought, that’s the right attitude. Let’s be curious, let’s be open, let’s see what life will bring.

There is the crescent moon, there is music, there is rain. We have laughter, and love, and the gift of knowing that everyday is precious. We have something that so often alludes us in life, perspective.

Yes, this is the third act in the life of our love, and yes, it will be funny, and dramatic, and sometimes even overwhelming, but we will stand together to face it, our love is stronger than all of this.

Love to you all, forget those little things.

Everything counts.

And nothing matters.

See how beautiful the moon is.

 

Shari, March 20th, 2023

 

beauty, cancer, depression, family, Life in General, Marriage, men, writers, writing

Lost Seasons, Perfect Days.

Today it is raining in slivers of silver and the sky, white and pearly, seems more a tantalizing veil of depth than an opaque discouragement. My husband feels well enough to work a bit in the garage and so, while I have this time and energy, I will tell you the story of this last year, and I will not be afraid.

Not all of what we’ve gone through, just the part that has kept me from writing, from sharing too much, from turning my focus away from life outside our swirling world of doctor’s meetings, medical testing, inconclusive results, surgeries, biopsies, and uncertainly.

I’ll explain that in a moment, but it comes to this; life changes, nothing is certain, and we have had a face-slapping, butt-kicking reminder that all we have is this moment, so we might as well make the best of it.

My husband, Joseph, has congenital heart disease. It’s not his fault, it’s not a result of diet or lack of exercise, he inherited it from his mother’s father. He was told at forty that this is a condition that worsens with every generation. After three different angioplasties, where they go through the main artery in his thigh to place a stent in the blockages in his heart, we were informed that a double-bypass, open-heart surgery was his ‘best option.’ It should buy him anywhere from seven to twelve years.

So we waited, we prepared ourselves, we promised each other that life would be better when he could hike again, work without being winded, build up his strength, lose the weight that was impossible to shed when your metabolism isn’t working well because your heart is only pumping less than 60 percent of what it should be.

For six months we waited, for him to be vaccinated, to be able to get a place in a hospital during a major pandemic, to have all the pre-surgery tests done, and all the while he worsened, until just walking a few yards left him winded and holding his chest.

I won’t go into all the psychological side-effects of going from being a bodily strong man to a person who feels physically vulnerable for the first time in his life.  That’s too big a gaping break in the bridge of emotional damage to cover here, perhaps I will share it another time.

The day of surgery comes, because of covid, I am not allowed in the hospital, so I drop him off at five a.m. at the main door of the hospital in the dark, it is snowing. He hugs me and tells me not to worry, to never be mad at the girls, and then I watch him walk away. I smile and stay brave, but as he disappears into the lobby, I break. Not a hard snap, but a crinkling of everything holding me up, as though a beautiful, smooth piece of parchment paper is rudely crumpled into a small wad and then discarded. That’s all it was holding me up, paper. I weep all the way back to the hotel.

I try to lie down but every time I close my eyes all I can see is the scalpel slicing through the skin and thick, powerful muscle of his chest, the image and sound of his breast bone sawed through and ‘cracked’, as the surgeons so airily explain it, the clamps that pry open his rib cage and hold it up, his heart out of his body lain on his chest.

Several hours later, the surgeon calls to tell me it went well, he’s in recovery and should be coming around in about four hours. I breathe for the first time in what I realize is weeks.

Yet, in less than two hours later I get another call. The conversation goes like this.

“Mrs. Stachura? This is (name withheld) I’m the respiratory technician and I’m looking after your husband today.”

“Thank you so much, how’s he doing?”

“Pretty well, I actually think I’m going to go ahead and take him off the respirator.”

“Okay, great. When do you think he will wake up?”

“Oh,” I hear uncertainty in his voice, “he’s awake now. He’s looking at me gesturing for me to take the tubes out.”

“Then get off the phone and take them out!”

Here’s what I find out later. Not only did Joseph wake up far too soon after the surgery with breathing tubes down his throat, he was tied down to the bed, his hands were Velcro-ed to the bars, it was a nightmare scenario. They had not given him enough anesthesia, and he possibly even woke up during surgery.

Then he spends a week in the hospital alone. The nurses change every twelve hours and they are never the same so he has no real advocate. On the seventh day I am asked to come to the hospital for physical therapy training, to learn how to help him in and out a car, shower, up stairs, etc. When I finally find his room and he sees me, he is so relieved he just starts to weep. All I can do is hold him, ever so cautiously, the way you would cradle a fragile porcelain vase you just glued back together, afraid it will fall apart again, or that you will do it more damage. My husband is a shattered vessel, stitched back together, but not yet solid, not yet whole.

Our good friend Ben, a retired firefighter with the soul of a shaman, insists on meeting us at home to get him settled. Though I had said we’d be fine, of course he knew better. Things were much more difficult that we had imagined. The surgeon’s assistant had told us to buy a recliner because Joseph wouldn’t be able to sleep in a bed, and she was right as well. For two months he slept an hour or two at a time in that chair while I stayed on the sofa next to him. Eventually he convinced me to go sleep in the bedroom, but I kept the door open and woke up whenever I heard him stirring. Even walking to the bathroom was a challenge. Taking a shower was downright scary. I learned about blood pressure, sorted a confusing array of medications, changed wound dressings, and played cheerleader. (Minus the short skirt and kneesocks) It was a full-time, constant-focus occupation. All else fell away, and I didn’t even notice. Spring passed with no visits to see the flowers in meadows, no celebrations.

Other than a trip to console the mother of my daughter’s first love, who was murdered, and get her through everything from cremation to what would have been his twenty-fifth birthday, a trip that came over my husband’s own birthday, but which he would not hear of me not taking, because that’s who he is, more weeks passed with us not really noticing. Pretty soon it was summer, hot, but there were no visits to glorious swimming holes, and I had to hang heavier curtains over the windows so we could watch TV in the daytime, something we never usually do.

Eventually, he could venture out, just a bit, with a pillow strapped to his chest with one of my long scarves. I would say, “Open heart surgery,” to explain quickly when people stared, though my best friend told me I should tell them “I tried to get him to give up the blankie, but he just won’t do it.” I think I’ll try that.

But he wasn’t getting much better, we kept telling ourselves that the doctors only say that he’d feel better in a few weeks because they don’t want to scare you with the truth of how long it really takes to heal and get back to ‘normal.’ But surely, we kept repeating, this was all part of the regular healing process.

Then, six weeks after surgery, at one o’clock in the morning, Joseph woke me up from a dead sleep, and I could see the consternation and confusion on his face. “What the hell is this?” he asked, pointing to two lumps on his collarbones, both the size of my fist.

My first thought was lymph nodes, but they were too low on his chest. They were goose eggs on his collar bones, exactly symmetrical. We called the amazing Ben, who, being used to long shifts with broken sleep, listened to my report of his blood pressure and looked at texted pictures of the area, then told us to go to the ER.

The faces of the doctors were blank. They had no idea. They ran him through every test they could think of−CT scans, ultrasound, blood, urine, they brought in other doctors to look at him, but nothing. No one had ever seen a presentation like this.

So, we went home with no diagnosis and an appointment with his cardiologist. And at the cardiologist’s office we were met with the same confused expressions, more doctors came in from other rooms to say no one had seen this. Shoulders were shrugged, palms were turned upward in expressions of ignorance, No help there, but more tests were scheduled.

Since then it’s been a halting, clumsy dance of tests and fighting for more tests and clearer results, and being told nobody knows, maybe the Mayo clinic?, maybe special doctors in Philadelphia?, maybe this specialist, maybe that hospital. He went through several days of having radioactive substances injected between his fingers and toes then hours in an MRI machine. Joseph is claustrophobic, so though I wasn’t supposed to be allowed in with him, they brought me in to talk him through it.

Joseph would start to panic as a huge flat panel was lowered to within a half inch of his face and he had to hold still for twenty minutes. “Tell me about Venice,” he would plead.

So I would walk him through the streets of Venice from a chair a few feet away, speaking loudly over the machine so that he could hear me, we walked together over rain-glistening cobbles, along familiar canals, I described the costumes of Carnivale in great detail, the Murano chandeliers in the shop windows and hotel lobbies. We wandered the narrow back streets at night, and saw the torches lit and placed in iron holders as we walked backward in time while I showed him the story as it showed itself to me.

We were so filled with hope that this would give us answers, that we would have a plan, something to fight, to deal with, to accept even. But on the morning after those tests in yet another hotel room we got the news.

“No results, everything looks normal with the lymph system.” Joseph was angry, almost desperate, shouting, “Then what is wrong with me?”  I absorbed all I could but even trying to justify the results as something positive I was met with his frustration. I was helpless.

While he called doctors, I went into the kitchenette to hide while I lost it, sitting at a little built-in table in a Victorian hotel, I gave in to disappointment and frustration for the first time. My head down on the table I struggled to sob silently, sucking back the sound, until Joseph came in and told me to go ahead and cry, because I deserved it.

Since then, we’ve been through a myriad of other tests, including repeating that first lymphoscintigraphy twice more. A biopsy of the swellings, a colonoscopy with biopsies to rule out infection, and I can’t even remember what all else. Now we are more cautious with our hope, we’re stingier with expectation. That way the disappointment doesn’t overwhelm us, knocking us on our asses every time, it just laps around our legs, leaving us damp and chilled.

And still , we know nothing, as fall leaves in the wind begin paint the sky.

It’s been six months since the surgery, and he is worse than before the surgery. He’s still wearing a small pillow strapped to his chest to try to relieve the constant pressure that makes him gasp, sometimes cry out in his sleep, and often clutch his chest until the stabbing pain subsides enough to endure again. And now we get new information. If it is Lymphodema, it is not fixable, and it will get worse. When Joseph went to see the wound specialist−after six months he still has a hole in his ankle where they removed twelve inches of artery to use in his chest that hasn’t healed−the doctor noticed swelling in his leg that is dimpling. She told him that it can worsen and the skin can become ‘like bark.’

And now my husband, the man I love and adore, the sexiest man in the universe to me, confesses with a tear on his cheek that he may become a ‘monster.’ That I might be with a man physically disfigured.

I kissed him and told him not to worry about me, my secret fantasy has always been the leaf man, the half-beast of the forest, but I know it’s not just me. How does anyone adjust to such a thing?

With courage of course, with love, with time.

And speaking of time, spring has passed, summer is gone, fall is showing the last of its glory, and still we wait, but I have learned something. I have learned so much, but especially this−how to make even illness and uncertainty fun.

It’s a strange thing to say, to long for, to work at, but having fun and enjoying life is the best way to honor it all. So, we play scrabble for as long as he can sit up. We take very short walks in this place we chose for the breadth of its natural beauty. We drive to see waterfalls. We put on music and sway together. We find the moments to celebrate, to laugh at it all, and to love each other with a new ferocity.

At the end of the day, I am happy. I understand that we are not waiting for some result or even a new plan, we are living now, we can laugh now, we can share secrets and giggle, and make amazing food, and watch the light on the water from our porch.

There isn’t anything better than this anyway. Venice will wait.

Seasons have passed, but in those months, in those weeks, there have been perfect days, better than we have ever shared. We are together, and we will find a way to make even this fun.

Take care of yourselves.

Take care of each other.

Find those precious days.

And write them on your heart.

Shari, November 11th, 2021

America, authors, beauty, creating character, creative inspiration, depression, Entertainment, humor., Life in General, therapy, writers, writing

I Didn’t Order This

I find myself stuck in a kind of limbo, and I know I’m not alone.  I want to write, to be creative, to offer love and support to others in greater need than myself during these tough times, but it seems there is little I can do to escape the sodden feeling of helplessness, the ‘what’s the use?” worm in my brain, the anxiety of watching my country torn apart, the constant worry for friends and family in danger.

Like a compulsive shopper, I’ve been inundated with deliveries, yet only a few of them were signed for by me. Some of them were dumped on my doorstep as surely as a stained couch on the side of the road, but some of them I must admit I sort of rooted around in a dumpster to find, I didn’t ask for the garbage to be there, but let’s be honest, I’ve pulled some crap out of there that I do not need.

So I see no alternative. I’m returning these items I didn’t order. Check any box you like on ‘reason for return’; delivered to wrong address, doesn’t fit, item not as advertised, quality not as expected, pick any one you like, they all work.

Because while we can’t fix any of these major things on our own, namely-worldwide health problems, or global warming, or a crooked con-man getting elected and abusing our government in a sad quest for power at any human cost, we can work hard to lighten the load a bit for ourselves and others. I didn’t order any of those evil things, and while it can be argued that many people did, I don’t have to keep the negativity they heaped on the rest of us because of their ignorance and fear.

Still, it’s depressing. So I’m sending it back. Call UPS, drop it off at the post office, send those FB idiots on their way, it’s a struggle, no lie, but I’m about at the stage where if I don’t deliberately dig out of this hole of depression and helplessness, I’ll be buried alive.

That’s why I go out and take these silly pictures of myself. Wish I had a whole bunch of models, but I only have me, so I bought a cheap tripod that I can carry around hiking, a remote shutter, and threw some thrift store prom dresses in a back pack and headed out into nature with my cell phone. I have to do something, anything, to keep my spirits up, and if it makes other people happy to see me being ridiculous, (and having fun), that’s just bonus points!!

I’m returning the moping at home days, don’t need ‘em. I’m shelving the excuses for drinking too much every evening and replacing it with finding something positive to focus on. I’m rewrapping the lonely despair in its original packaging and stamping, ‘RETURN TO SENDER’ in big red letters on the outside. I’m sending the laconic lack of writing inspiration on a one way return and demanding the manufacturer replace it with what I ordered, some old-fashioned sit-your-ass-down hard work.

Because of course, except for the uncontrollable, I am the manufacturer. I created all these responses, maybe I didn’t order the cause of them, I didn’t ask to be stuck away from my family and incapable of so much as donating blood to help others, but instead of being frustrated that I can’t do more, I can try harder to do less for as many people as possible. It might be a letter, a silly note of hope and a free book. It might be a phone call to tell a joke in person, or a pie dropped off on a front porch, truth is, I don’t know all the things I can do yet because I haven’t used my brain to work on that. And that’s my fault. I was blessed with energy and some intelligence, and who’s wasting that? Me. I am.

I’ve been waiting, I guess. Now it’s time to wake up and start refusing those daily missives from myself that say, “Mope, hang out, there’s nothing you can do, this is a horrible day, month, year.” I had a stern talk with myself then offered some loving advice. I’m including here so you can use the same pep talk for yourself, and it went something like this: “Buck up shithead!! Get over yourself and be of use to someone else!!”

So I won’t talk about the death and the illness and the hungry and the financially fucked. I will step in and do what I can to make each of those things a little lighter, a little less long, and hopefully a little less scary. I know that I’ve been afraid, I think maybe we all have.

But life, such as it is right now, goes on, and I’ve decided it’s time to get back to it. Not by rushing around spreading germs and anger, but by doing what I can from where I am. And surprisingly, it’s been quite a lot.

And that makes me feel better. It leaves me with a flicker of hope that this shade won’t last forever, that most humans care more than they don’t. That the ones who promote cruelty can be drowned out by those of us raising our voices in song and encouragement, that we, in the amazing words of Amanda Gorman, can be the light.

Cast your own shadow by shining in the darkness. It ain’t easy, but it’s our choice.

Pack up all that misdirected bullshit and send it away.

Then pack some love and hope and send it out.

Be sure to take some for yourself.

Good luck to us all.

Shari. February 21st, 2021