View from the Cottage

When Dorothy and Toto took off down the yellow brick road, it was their last hope. They needed to find magic at the other end or they would be forever lost.

The tornado that’s been twisting over me and Cecil has lasted for ten years. When hope was all but gone, we came upon the road. It wasn’t yellow and it wasn’t brick, but there was magic at the other end. Not smoke and sound effects behind a curtain, but medical technology and stem cells from the umbilical cord of a newborn infant, all of it unfolded by a team whose professionalism and dedication leave me speechless. 

A stem cell transplant ain’t milk and cookies, as Cecil puts it. All I can say is his team did it up right.

He left the hospital Thursday. For the first time in a month, he walked outdoors. There were no IV lines traipsing from his body, no tubes down his throat and no needles digging into his hip for marrow. He felt the sun on his skin, smiled at the warmth of it, then made his way to where he had to go…the Cottage.

When we learned he would need to stay close to the medical center for two months after discharge from inpatient, I set about finding the right place for him to recuperate. It couldn’t be ordinary or even pretty good. It had to be the sort of place that takes your breath away, a place that soothes anything that comes upon it. It had to be full of life from deep within.

When I saw the Cottage, I felt I’d found the place from which Cecil would come back to me.

Deep in horse country, set in the middle of pastures and rolling hills, the Cottage has views that cause you to stop and gaze. There are flowers and birds and woods and a blue sky that yields only to sunlight. Tall grass waves at your knees while you wander through fields, the breeze whispering across your face, the scent of lavender drifting with you as if by design. Everywhere you look, there is peaceful beauty.

Though our time here will be enriched by fine things, removed from the pace of life catching us up, it will be riddled with complex battles that have not yet been won or lost. Cecil’s white counts plunged over the last three days and we are desperate to know why. Stem cells from the infants are taking on the wicked witch, but she is powerful and they are young. We sit amidst the chaos and wait, ruby slippers at the ready. When ‘Little Cecilia’ waives her magic wand, we will tap the slippers together, three times, fifty times – whatever it takes – because the best view from the cottage will be the one down the drive and back along the road. There is, after all, no place like home.

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I’d like to thank those of you who have supported my blogging about Cecil’s transplant. It has been helpful to put the experience into words. I will continue to update on his progress each Sunday when I post, but I think it’s time to move on to other topics. There are so many things to think about. I hope you will visit TigerBird Sunrise each Sunday morning and join me in the discussion. Have a great week.

Labor Pains

In my March 25, 2012 post, Babies to the Rescue, I spoke of the two infants whose umbilical cord stem cells would be intravenously introduced into my husband’s body, with the hope they would engraft and produce a new immune system for him. Inasmuch as Cecil’s own defenses had been depleted by Non-Hodgkin's lymphoma and the treatments he underwent to put him in remission, the babies’ cells had become his last hope. 

April 3^rd was an exciting day. The Babies (as we had affectionately come to call them) were to be brought on-board. While friends and family followed through a Facebook group page, Baby #1 was brought into Cecil’s room and introduced. You could all but hear a cheer ring out from around the country. That afternoon, Baby #2 came on-board. Another cheer. It was Day Zero…of what would be a one-hundred day ordeal. The waiting began.

We learned the babies were both girls. One’s blood type was B+ and the other’s O+.  We called them Miss B Positive and Miss O Positive.

From then until now, Cecil’s liver has wavered. His appendix has come out. He’s suffered one fever of undetermined origin after another, each accompanied by a new round of diagnostics, each followed by more drugs being pumped into the lines that make entry through his juggler. His lungs have become compromised. His blood pressure has gone up and then down. His gut was infected. He was weak. He was nauseous. There was no appetite. It has been a rough ride.

Then, Day 13 came along. The babies’ stem cells had engrafted and begun to build an immune system. We had new life.

By Day 15 there was a rash, one that looked like something was eating him alive. It seemed the Babies were attacking Cecil. Flickers of hope and optimism extinguished as quickly as they had appeared. As it turns out, though, the rash indicates that the Babies’ cells are cleaning house and, as long as they don’t kill the Host in the process, he is on the road to recovery. Though the rest of us have been white-knuckling it through all of this, Cecil has shown grace and unyielding spirit. 

I'm sure it has been a difficult role reversal for him to be the patient. As labs come in, Cecil is in the bed, but then he is gathering his Johnny and pulling his IV pole over and crawling out to review test results, interpret indications…and to tell his team what doesn’t make sense. He banters back and forth with them in their own language and, at times, actually directs the course of things.

Cecil loves being a doctor. He has been fascinated by medicine since he was a boy. He grew up with three brothers and a sister on the family’s hundred-and-fifty acre ranch in Brownfield, Texas, best described as flat, dusty and barren land in the middle of nowhere. They had geese, pigs, sheep, chickens – you name the animal, it seems there was a family of them on this ranch. 

 

The kids moved irrigation pipe and picked cotton. The boys also branded cattle and, whenever they could get away with it, blew things up. It was a childhood to be remembered.

Cecil’s father was the only doctor for a hundred-sixty miles to the south and a good sixty miles to the north. He made house calls and frequently disappeared into the night to tend to one emergency or another. Cecil would hear the phone ring and he’d be waiting at the door to head out with his dad. One story in particular comes to mind this morning.

Cecil was about thirteen at the time. He went with his dad to the hospital and made himself available near the operating room, hoping this might be the time he’d get to go in and watch. His dad stopped to talk to another doctor, then walked by without looking in Cecil’s direction. The weight of disappointment came swiftly. But then, from just at the door to the forbidden suite, came the words Cecil had imagined for so long, the kind of words that transform a boy into a young man.

“Well, come on, son. Let’s go.” His dad pushed open the doors and walked through. Cecil caught his breath and followed his father in.

Inside the scrub room, his father stripped off his shirt. Cecil did likewise. Then came the pants and the socks and shoes. Cecil stood quietly in his underwear. The nurse disappeared and came back with green scrubs, shoes and booties. Finally, there was a hat and then a mask. Cecil felt like a doctor himself.

At the sink, he and his dad scrubbed. They kept scrubbing, and then they scrubbed some more. Cecil waited for his dad to say it was good enough; his skin was getting raw. They worked in silence, the father and the son. The son copied the father’s every move and he memorized every moment.

After they’d been draped in gowns, the nurse brought gloves. Cecil’s dad slid into his with laser accuracy. Cecil got three fingers into a single hole. A second pair was brought. He tried again. And then a third time. Finally, he got them on. “Don’t touch anything,” the scrub nurse warned him.

Cecil’s father led the way into the operating room. Lights were blazing over the patient, who was draped on the table. She was large. Cecil thought she was bloated, like his calf had been last year. He figured they were there to let out the gas.

As he approached the table next to his dad, who now seemed more like the doctor than his father, Cecil’s nose itched. He scratched it with his hand. Without looking up, his dad intervened. “You’ll have to go stand in the corner, son – away from the patient.” He kept working. Cecil was devastated, but there was no time for self-pity.

The O.R. nurse handed over an instrument. Cecil stood on his tiptoes to see. His view was blocked, but he could tell his dad had just cut the patient open. Cecil’s heart pounded. He wanted to see more. He stretched and leaned this way and that. Suddenly, the nurse walked over to him. “Hold out your arms.”

Puzzled, Cecil complied. The nurse laid a towel across his outstretched limbs. He didn’t say a word. Seconds later, at the table, his father passed something bloody to the nurse. She turned and crossed the distance to Cecil and laid the bloody thing into his arms, then returned to the operating table without speaking.

Cecil looked down into the face of an infant boy. The baby opened his eyes and looked up – an indescribable moment for each of them. One would never remember it; the other would never forget.

And now the stem cells of Little Miss Baby B+ or Little Miss Baby O+ are duking it out with bacteria and viruses, and who knows what else, to save Cecil’s life. One of them will carry the day and become Little Cecilia. She will have embarked on life, and then given it, without realizing the miracle of either event. Cecil, on the other hand, will never forget that he owes each breath to the gift of an infant, like the bloody bundle that opened his eyes and looked up all those years ago.

The Fourth Wall

When I looked in the mirror this morning, a pale and strained face looked back. Bags and dark circles, no make-up. The dirty hair limped to either side. It was a lifeless face of no distinction. But, in here, none of that matters. In a hospital, you don’t care what you look like, and neither does anyone else. You check your sence of social norms at the door, along with your pride, and enter a world removed, where life passes by on the outside and doesn’t look your way. 

My husband, Cecil, has been in the stem cell transplant unit for two weeks now. He has several weeks left to endure. He sits in a bed with a big picture window before him, but he cannot touch what lies beyond the frame. He can see birds visiting trees, but he cannot hear them sing. Leaves dance on their branches, but no rustle makes its way to his ears, and no breeze blows across his skin. He cannot feel or sense or soak up the inspiration of the out-of-doors. Cecil can only sit within his four walls and imagine or remember what he cannot have. It’s the fourth wall that makes the difference. Though this one is benevolent, it completes the isolation, nonetheless. 

For Cecil, life has been reduced to the space in which he is confined. Life is disturbingly small when you are removed from most of what makes it large. In some ways, it’s as if he has been caged up and locked away; as if we are catching a glimpse of what the feds had in mind for him when they tried to put him in prison for the rest of his life.

Just the past two weeks have changed him. How quickly it happens. He is absent from his life. What involves him is here and now, not out there and not what went before. Those things become irrelevant. The same goes for the people in his life. They move forward with the changes that come at them each day. It doesn’t take long before his life, and theirs, have turned different corners and gone their separate ways.  

When Cecil was fighting off the feds, I swore up and down that, even if he were convicted and sent to prison, it would not change us; we would always be the same. I see now how naïve that was. The process of incarceration, by its very nature, does not allow connection. The inmate must forsake the bonds that once nourished him. He must, in fact, let go of his sense of self if he intends to survive. That part begins right away. 

When the feds raided Cecil’s office, they read him his rights, slapped on a pair of handcuffs and delivered him to the jailhouse. An hour earlier, he’d been a doctor seeing his patients. Now he was part of the justice system.  

They came in through the basement of the jail and rode up to an interior hallway. A guard ordered Cecil to sit on a bench, to which he was shackled with a chain that went from his wrists to a hook between his legs. From there, another guard led him off to have his mugshot taken. The inevitable shower while being watched by a stranger followed, then Cecil hurriedly put on the blue pajama pants they handed him. He accepted the blanket and pillow, and dragged the flimsy mat to a cell that would be his. Bright lights drenched the common room just outside the cell. A constant drone filled every space. The windows were at the ceiling - small rectangular inserts of glass, so encrusted with dirt they might as well have been made of wood.  

Early the next morning Cecil was accosted by another prisoner who tried to take the watch I’d given Cecil for our anniversary one year. Others looked on, but no one intervened. It was up to Cecil to set his own course. He got up off the floor, where he’d slept, and shoved the bully into one of the bunks, snarling into the guy’s face, “I think I’ll keep it.” 

It took four days to cut through the prosecutors’ posturing and chest thumping, so Cecil could be released on bond. While the lawyers wrangled in court, I visited Cecil in jail. The elevator doors closed behind me. When they opened, sterile air that smacked of anything but home blew up into my face. There were no smells. No fabric. Lights buzzed overhead.  

Heavy doors to my right clicked open when armed guards pushed a button from behind bullet proof windows. Through the doors, the room was small and without decoration. On the left, a row of chairs sat close together, as though joined in a common experience. Each faced the same sheet of glass, a conspicuous divider between those who were free to go and those who weren’t. On the other side of the glass sat a line-up of men, each distraught and struggling for composure. Walls around them, guards, guns. It was a cage, and they were the encaged.  

Cecil was among them. His hair hung in separate strands, filth somehow already having made its way to him. His face was rigid as he lifted the phone to talk to me. There was so much to say, but neither of us had the heart to say any of it. For a while, we sat and looked into each other’s eyes. We managed small talk and then a guard indicated my time was up. Already, the divide had begun. 

I couldn’t touch Cecil, so I pressed a kiss from my fingers to the glass and got up to leave. When I turned back, his hand was pressed against the kiss. In his eyes, I saw anger and fear. I smiled at him, lingered a few seconds, then disappeared through the heavy doors that slammed shut and locked noisily behind me. 

All of this did such violence to who we were, and it was just the intake process. Imagine where it would lead over time. Imagine life in prison.  

For five years we did battle. For five years, I pictured my husband lying in a darkened cage – alone and desperate – the years of his life escaping him. Thanks to a jury that saw the government’s case for what it was, that ultimate travesty did not make its way to us. But it so easily could have. 

I look up at Cecil, now fighting a different battle. He is confined within four walls, outside of which birds sing and leaves rustle. But, this confinement is different. The tubes and lines running into his neck are giving life, not sucking it from him. Those in control of the process are trying to save him, not knuckle him under. And when it’s over, he will be enriched instead of depleted. The fourth wall will come down and he will pass through to the outside.  

Life has its rough edges. Cecil and I have been snagged by more than a few of them. We have been cut and bruised, and we are slightly bedraggled. But as long as we can feel the wind, life will be full.

Delicate Beauty

The last twenty-four hours have been long. A stem cell transplant travels an unpredictable course but, once you commit to it, there is no turning back. The ‘easy’ days of chemo and radiation are behind us. We’ve now entered the infection, rejection and graft versus host stage; we hope to avoid them all, but must be prepared for any one of them.

 Yesterday, infection made an appearance: high fever, weakness, the shakes. The medical team took more blood cultures to find out what kind of infection has set in. Meanwhile, monitor alarms cried out all night, nurses came running. More bags hung; more vitals taken; more meds loaded into the lines. Cecil is on triple antibiotics and we now ready ourselves for the scary part of the journey.

It’s been a long time since I’ve taken things for granted. I used to accept the gifts of love and happiness, freedom and good health, as if they would always be here. I know now how easily they can slip away. I am saddened to think of the days I would move like the wind through my daily business – assuming, without thinking it, that my tomorrows and somedays would be endless.

When the feds came knocking to take my husband away forever, then when death stood in line behind them, I started to look at things differently.  

So, now, when he asks me to bring him something from across the room, I run to get it instead of snotting off with, “Do I look like Stepin Fetchit to you?” As he fights to stay alive in his hospital bed, I stop and smell his dirty clothes rather than toss them with emphasis into his hamper.  

Needless to say, I am ruminating a lot about the notion of marriage. How many people do you run across with whom you would plan a lifetime? Someone who will hold your hair back while you toss your cookies into the toilet, and love you no matter how bad you look or how wretched you smell. This is a person whose absence makes the bed feel empty, and without whom all the money in the world would be pointless. 

Now, here I am, all full-up with an appreciation for the beauty of marriage, and I must leave my husband’s bedside and go to work where I swim in the blood bath of marriages that have failed. I am a divorce attorney. It sounds so scheister-ish. Though I don’t cheat and lie and steal, it is my job to make the other guy look bad. So, that’s what I do: she’s a stinko mother; he’s a control freak, and he lies. It’s a dirty business. 

To get where I need to go with a case, I must become my client’s best friend and, I dare say, the devil incarnate to the other party. I usually don’t care about that second part because, before we’re done, I most often see the opposing party as someone who will stoop as low as need be, and say whatever sounds good, to get what he or she wants. It is a Me, Myself, and I experience through and through.  

As we work a contested divorce case, I need to know about their finances, their flaws, their sex lives. Once we cross those hurdles, the details come more easily. I hear about the small things that make a marriage go bad: He doesn’t listen. She gets sarcastic when they fight; he walks away. She always wants everything her way. One of them is a neatnik, the other a slob. One likes to save money, the other spends it like there will always be more where that came from.  

I read their emails and their text messages to each other, words and feelings flung into cyberspace, missing the point, flaming the cinders that linger angrily, waiting to burst into raging flames that cannot be contained.  

When the gloves come off, there is no end to what we might expect. A sign in my office says “It’s not who you marry that counts, it’s who you divorce.” If only the lying and the greediness were as bad as it gets.  

Once committed to the process, most divorce litigants can justify almost any kind of conduct. My personal favorite is when they pretend to be afraid for their safety and take out a protective order to get the spouse out of the home. 

It’s all so sad, and so destructive. These people once loved each other enough to bring themselves to the edge of a future that waited for them. Somewhere, somehow, they turned…away from, and then against, each other. I can’t help but think it would have been less painful if one of them had become less controlling, less messy, more understanding of quirks, or more respectful of the differences between people. Had they looked into their partner’s eyes and seen the kindness, the humanness, the vulnerability…maybe they would have found a way to appreciate what it was that brought them together in the first place.

Instead, a disturbing number of disengaged, or disenchanted, spouses go looking for a ‘bull dog’ attorney, and set in motion a process they will learn to hate long before it has ended. If only they could appreciate the destruction brought about by the “I’ll see you in court” approach before they marched so defiantly into it. This process tends to bring out the worst in even the best of them.  

So much so that, when I take in a new client, I try very hard to weed out those with the ‘all for me’ attitude. I like to represent the good guy. I’m sure other attorneys say the same thing, but, I swear, they would have to be delusional to actually believe they got the clean end of the stick in some of these cases.

The other afternoon I was driving along a back country road. The sun was low in the sky. Its warm slivers cut in and out through the trees as I passed, striking my face again and again. This was not the sort of sunlight in which to bask and drift off. There was an energy to it that made me sit up and take notice.

I started thinking about my cases – so many of them; so many marriages that don’t make it. What happens? My marriage has been through several of the challenges that make it onto the list of things most likely to cause divorce, but Cecil and I have grown stronger together. We found a way to make it through the storm without jumping ship.  

He whispered in the darkness late last night “Will you cuddle me, I can’t stop shaking.” As I crawled in and wrapped myself around him, I understood the meaning of For Better and For Worse.

Day Zero, continued

Cells from Baby #2 are on board. Both babies are girls. Now we just wait and see which one takes over. Cecil is doing great, so far.

Day Zero

Cells from Baby # 1 are on board.

Life Suspended

This post will be scattered. My thoughts and emotions are all over the place. Probably won’t be the best writing I’ve ever done, either.

 It’s Saturday. I’m sitting in a chair across from my husband. He’s lying in a hospital bed, surrounded by screens and alarms and dials and gadgets of varying sizes. They all do something different. Bags of liquid hang from a pole; carrier tubes snake in through his neck and his chest. He’s wearing a knit cap to keep his head warm, now that he has no hair. I’m trying to carry on small talk, but then he can’t breathe and then he starts shaking all over. The nurse runs in and shoots Demerol into his vein. Then he’s talking nonsense. Then he’s throwing up.

 In his eyes, I see fear, a wavering that wasn’t there before. It’s all so visible now, much harder to ignore. The formless shadow begins to take shape.  

Life suspends in a place that hasn’t declared itself and I sit like a child in the corner, while four members of his medical team work over him. If only this were going to be the worst day. But we are a long way from there.  

I turn inward, trying to find someplace less scary to be, and end up traveling again through the last ten years. It was that long ago that Cecil was raided by the feds, and then indicted. Those were the days when life in prison was bandied about as a very real possibility. It was also when Non-Hodgkins Lymphoma came at us. It’s been ten long years since life became tentative.  

At first, the prison threat tracked alongside the cancer threat. Then it was just the cancer. To me, they were both death sentences. I didn’t know when he would be taken, or by what means. I just kept waiting to turn around and see him gone.  

Now I’m thinking of my mother. She had that moment. She turned around and my father was gone – taken, one day. Their love and life together were interrupted, too – snatched out from under them and suspended through time indefinite.  

For her, the news came in an envelope delivered to the front door, an envelope that changed everything. The telegram started with the dreaded words: “I regret to inform you…” It’s the message that brings a military wife to her knees. My mother was seven months pregnant with me at the time. My father had been recalled to active duty with the Air Force a couple months before and had been sent to fight over the frozen tundra of North Korea. He left base one night on an interdiction mission and never returned. They could not say what happened to him. He was Missing in Action.  

Two months later, my mother gave birth alone. The days and months passed. It got harder for her to picture his face and to hear his voice. She clung to the only sliver of her anguished thoughts that she could bear, hideous in their own right, but better than the alternative: he’d probably been captured and was being held as a POW. 

When the war ended a year and a half later, they televised POWs crossing the bridge during repatriation in Panmunjom. As the men hobbled across, one by one, expectant and frightened families watched their television screens. My mother stood silently as she searched the faces, her hands clenched, her heart pounding. The last man came across. His family must have been so relieved. Mom’s knees buckled and she went down. In an instant, she realized her husband had vanished. There was no explanation and there likely would never be one. She would be left to wonder what had happened to him and where he was.  

There should have been answers, but there weren't. Eventually, the government changed my father’s status from MIA to Presumed Dead, and that was the end of it – for them, but not for her. She wasn’t up to presuming he was dead. So, she waited and wondered and agonized every day over what might have happened to him, imagining the worst possible fates. Years passed and details of the life they shared began to fade. But, the anguish never did. It lived along side of her in his stead.  

Like my mother, I have waited and agonized every day. I have wondered what would happen to Cecil, imagining the worst possible fates. I’ve tried to drink in his sweet blue eyes, for fear that details of the life we shared would begin to fade. The anguish has lived along side of us. Sometimes I saw all of him. Sometimes it felt like I was looking at a ghost. 

Cecil’s life has been suspended for too long, but now we are at the crossroads. He will survive the demons or they will take him with them. The waiting and wondering is about to be over. My mother never got her answer, but I will get mine soon. Somehow, the not knowing is starting to seem better.  

He looks small in the bed. He looks less powerful than he’s always been. As I write this, they are ‘finishing him off,’ to use his words. Infection already in his lines. Platelets down below 10,000. Red cells down to 8. White cells are on their way out, too.  

It’s Sunday now. The sun is about to come up over the Blue Ridge Mountains. Things finally settled down last night. The fever abated. The shakes subsided. He slept well. At six this morning, the door opened, the lights went on and the team was in the room again, measuring, checking, adding more drugs to the lines. His blood pressure is mysteriously low but, otherwise, he seems strong. The fever will likely come back. And the shakes. And the breathlessness. And who knows what else. Every time I look at him, I whisper Hang on Baby. We’re almost there. 

 We are at T-Minus-Two: two more days of land mines; two more days of suspension. Then the babies’ stem cells will come on board.  

I’m looking out the window at the flowers and birds and the sunlight – the beauty that Cecil always says didn’t get here by accident. There is some kind of power somewhere, he says. I hope that power finds him now. It is too soon for this wonderful man to go anywhere but home.