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