#SOL17: 6 Days, 6 Months

Rob at home in September, 2015. He needed oxygen after the VAT procedure--a 7 hour biopsy surgery. A week earlier he was walking around living a life with a sharp pain in his side. 

I.

I have spent a good portion of the last 24 hours reading emails and notebooks Rob left behind from Fall 2015 and it has wrecked me. My husband had a distinct writing voice and reading his words makes the reality of the loss resurface so forcefully.

Rob was so hopeful through ordeal after ordeal. I noticed today as I was reading one of his notebooks that he mentioned the real possibility of needing spinal surgery. This was on December 21st.  I don't recall knowing that was a possibility at that time. I have forgotten so much. He was terrified of the idea of spinal surgery and yet he bravely faced it, along with scores of other medical stresses. Meanwhile, unbeknown to either of us, the cancer must have been progressing. The 6 months to a year timetable we had been told Rob had to live was wrong. I wonder had he not had the spinal surgery and instead began the Opdivo (which he never got to take) if his life might not have been prolonged. I did not want the cancer treatment delayed, but Rob and the oncologist felt that being paralyzed was too great a price and that spinal surgery was the better option.

A month later, he was recovering from the neurosurgery at the Kessler Institute in NJ. That next day (January 22), Rob and I had breakfast together--knowing that a blizzard was heading our way. Later that night and all through the next day, Winter Storm Jonas dumped 20+ inches of snow on the area and a travel ban was put into effect. I talked with Rob off and on throughout that Saturday and Sunday and he was so strange on the phone that I grew concerned and brought these concerns to the nurses' attention. I learned that I needed to be forceful as so often the nurses dismissed concerns or did not want to 'bother' the doctors.

It took Devon and me hours to dig out and fortunately we did as that Sunday night, we were rushing to the hospital Rob had been transported to.  Once again, Rob was spiking a very high fever and we would learn he had yet another staph infection. This would make the third one--all received at while at medical centers. My husband wouldn't be released from the hospital for nearly four more weeks. That's when he came home to die.

From the first diagnosis, tragedies began to occur--mostly medical mishaps mixed with stage 4 lung cancer. I do wonder what Rob's last six months of life might have been like had he refused all treatment.  Surely he would have had more quality time. The marked difference in my husband began just 6 days after the initial diagnosis of cancer. He was unable from that point to his death to resume the activities he loved to do. The multiple staph infections and surgeries stole most of his remaining time on earth--save those first six days. I can't help but think he would have been better off letting the illness progress without medical assistance.

Of course, Rob was a fighter and he was hopeful and he did believe he would beat the odds and live.

#SOL17: Paul Ryan, Mitch McConnell, Cancer and Financial Ruin

Earlier tonight, I'm reading before finishing  preparations for dinner when I see a notice from The Guardian flash on my screen with the headline, Congress approves initial measures to repeal Affordable Care Act.

from The Guardian

Take a minute to study the self congratulating smugness that defines these House Republicans. They appear quite pleased with themselves.


Or look at this image of Senate Majority Leader Mitch McConnell from this past Monday.

from The Guardian

After six years of vowing to repeal the Affordable Health Care Act,  these callous clowns are moving ahead. Full steam. No stopping. No plan.

But I'm not here to talk about health care as much as I want to say few words about cancer, grief, and the unnecessary burdening of those who already are bearing too much.

Please listen.

II.


A year ago this February I was wondering if Rob, Devon and I would lose our home. I was wondering if the staggering costs of health care and the loss of income would make living where we do impossible. Our health care payment concerns were tempered, in part, because we had pretty good coverage, amazing family and friends who helped us.

And we needed help.

Cancer treatment is expensive. Neurosurgery is prohibitive. Home care can break the little bit of bank you might still have. My husband could no longer work and had stopped earning any income the summer before and by February, I too stopped working completely so I could care for Rob who had come home to die.  Our health care no longer provided any services and my husband could not care for himself. He required round the clock care.  He could not move his body, sit up, stand, walk, turn himself. He was unable to take a sip of water without assistance. I had no idea how I would care for Rob and pay our bills once spring arrived. It was only my husband's death that saved us from financial ruin.

III.

I think about those dark days when I look at the jubilant faces of Speaker Ryan, his merry cohort of legislators, and Senator McConnell. I wonder how it is possible for them to be so out of touch with the sharp and unnecessary pain their careless actions are causing.

When faced with the imminent death of your husband, the financial ruin of your family, and the understanding that on your slim shoulders rests the financial responsibility of a teenage son who will soon be fatherless and is just a year away from college--and frankly the last thing anyone in such a space needs to worry about is what Congress is going to do to screw them over.

They, like me, are deeply hurt already. The surviving spouse has enough on his or her shoulders without having to now worry if the bit of cushion their health care plan provides is also going to be yanked away.

Adding uncertainty to such injury is nothing less than cruel.


IV.

Right now in the United States there is a husband, a dad dying of cancer.  There beside him is a wife who is facing what I faced a year ago.  That heartbreak alone, that immense loss is more than some can carry. At least I didn't have to worry that the multi-million dollar medical bills that were piling high as Rob's treatments failed one after the next would also be my sole responsibility. My health care insurance paid the majority of those bills.

Now, I would not know that.
Now, I would add worry as I could not know what the irresponsible GOP in Congress would be doing as I cared for my husband in his last weeks of life and comforted a young son who would no longer have his dad.

Why anyone would want to add to that grief, stress, and fear is impossible for me to understand.


V.

Fix health care?
Yes.

Revise the Affordable Care Act to make it better for consumers?
Certainly.

But do it reasonably. Not irrationally.

Shame on Paul Ryan.
Shame on Mitch McConnell.
Shame on all who support this recklessness.

These are little boys who have been tossed a new ball to play with and have no sense about the damage their actions are causing. I imagine these men might think differently if they were faced with the ordinary struggles you and I carry each day. I imagine they might pause a bit if they did not have the finest health care plan for free in their own back pocket.

#SOL16: Love as Location and Stance

I.

One birthday some years ago, Rob handed me a slim wrapped package to open. He and I celebrated birthdays one day next to the other and so it was not unusual to find one or the other of us opening a gift in mid November. That morning I unwrapped  a copy of Seamus Heaney's District and Circle--and with no classes to teach that day, I watched my husband and child leave for work and school and then sat down with a cup of tea to read that 76 page masterpiece.

And masterpiece it was. In the poem, "The Aerodrome," Heaney says that love is both location and stance and is shaped by the bearings taken. Heaney closes the poem by writing:

“If self is a location, so is love:  

Bearings taken, markings, cardinal points, 

Options, obstinacies, dug heels, and distance, 

Here and there and now and then, a stance."

II.

It's ironic how lines of poetry return almost dusty when we most have need. This is a year where I have learned a primal definition of need.  In a year of wild and dashed hopes, Heaney's insistence that love is both location and stance rings truer than any other time I can recall. I have always had a fondness for those lines even though I found them to be a bit baffling.  But tonight their meaning is clear.

When I think about love, my first instinct is to think of it as a verb. Love locates. It lifts and roots us to the here, the now, filling us as it empties--a slight nod to Escher's Waterfall. Love as verb resituates the impossible. But Heaney is so much more the clever artist and he wants us to think of love as noun.

If self is a location, he tell us, so is love. There's a conditional logic there to be envied and the use of a colon lays it out for us. Our stance with regard to love--the stance we take is predicated by the bearings we have taken, the geographies we have composed, as well as the options and obstinacies we have named and lived and out of all of this now and then emerges a stance we take and it is that stance that locates love.

The last year, the geographies of self and other, husband and wife, father and son, widow and son, presence and absence, love and loss have been nothing less than an opening-onto and a distancing-from. The death of my husband has left me worn, introspective, and terribly mindful.

III.

A year ago this Wednesday night I held Rob's hand as we sat side-by-side in the hospital's imaging center while waiting for Rob to be taken for a CT scan.  We chatted quietly now and then so aware of others in the room--a room where no one's chatter sounded weightless. Mostly, we were quiet. It was early evening and even though we knew that there was a chance something might be wrong with Rob, neither of us ever entertained the idea it could be life threatening, let alone, cancer. We were taking off at the beginning of the next week for our annual Maine holiday--a trip we never got to make. That night, the scan was done quickly and then we were off to dinner--just the two of us. We spent a good portion of the evening talking at a table for two and then listening to music. Devon was off at a friend's house spending the night. Neither Rob, nor I knew that this would be the last night we would ever spend together outside our home just the two of us.

Early the next morning, we learned Rob had cancer and 6 days later I would sit on the hard plastic chair in the surgery waiting room for 7 hours as Rob underwent a VAT procedure. Devon would vacillate between sitting in the waiting room and sitting in the hospital cafe. I refused to move as I was told this is where the surgeon would come to speak to me. The surgeon had told us the surgery would be about an hour. It was not. Rob would spend that night and most of the next day in intensive care and I would spend the night after that with him in his hospital room as he was so disoriented and scared.

Nothing would be the same ever again. Nothing. And I think this is what Heaney had in mind when he wrote about love as a location and stance. Heaney's notions of love are not concerned with the particulars of the story I tell here, but rather with the ways we respond--the stances we assume. Throughout the next six months, our stances were united, kind, loving, responsive, present.

Within the first 72-hours of the initial diagnosis, I quietly watched multiple lectures about lung cancer treatment late at night and by the time Rob was wheeled into surgery that following week I had examined the most recent statistics I could find about cure rates and lung cancer.

I was scared to death, realizing my husband might be dead by late winter.

At that time we did not know what stage cancer Rob had but we naively thought it must be stage 1 as he seemed so asymptomatic, so healthy. We would learn that it was stage 4 nearly by mid September. By then I would know that his chances to live were very slight.  I kept this to myself, never saying those words to either him or Devon and I would nod in agreement when Rob thought his chances were rather good. As the weeks wore on I began to believe that if anyone could beat this awful disease, it would be Rob.  He was so hopeful, so willing to do what must be done. He was so courageous. But error after error occurred and with each doctor mistake, my husband's chances for life waned.

IV.

I didn't know it during those terrifying months when each week brought with it some new life-threatening calamity to confront, but now I realize that there's a bit of grace that accompanies such a ferocious stance. I did whatever he needed to save him until I learned that saving him was no longer possible. Then I learned to privilege his comfort. Even when we were just minutes from learning the prognosis was now terminal and that Rob would likely die within a matter of weeks, his immediate concern was for me and Devon. I still find that amazing. And isn't that what love as location and stance is mostly about?

Love isn't about being blind, but it is about the way we chose to be present, even at highly stressful moments in life.  Love is largely about the stance we adopt. My stance, like Rob's and Devon's remained constant: whatever Rob needed we all did. Sometimes it really was that simple. By March the medical bills had grown beyond 6 figures and I had stopped working nearly two month prior so that I could care for Rob. The Hospice social worker told me she would try to get Rob into some facility and others supported that action. It is impossible to convey with these words how insular life becomes when days and nights are spent caring for the man you most love who is dying. Now and then I could find the occasional hour of sleep, but days went by without any rest. That night I sat next to Rob as I did each night and the house quieted and I looked at him and knew I needed to set aside the financial worries. I believe now that it was love that powered me as I had mostly stopped eating alongside Rob and sleep was rather rare for even when I did try to sleep I spent the time mostly awake.

Love is a stance--the attitude we accept/take/create/commit to.  But here's the thing I  most want to let you know.  It isn't the common definition of stance that most interests me tonight.  It's the secondary one. Stance also means "a ledge or foothold on which a belay can be secured." That's the power of love.

V.

No one in my life has ever loved me as my husband chose to do each day and it was by his side that I learned through experience the deepness and stability of love. Love did not come with conditions. What we have borne these last twelve months has given shape to the love that finds me tonight--a love that brings both tears and comfort. And I am in need of each.

#SOL16: Suffering, Death, and Love

Love (M.A. Reilly, 2016)    

Everything in life that we really accept undergoes a change. So suffering must become love. That is the mystery. —Katherine Mansfield, The Collected Letters of Katherine Mansfield: Volume IV: 1920-1921, p. 150.

I.

I made the image above while Rob underwent spinal surgery in early January. While Rob spent the fall fighting his way through two very serious staph infections that resulted in the need for emergency thoracic surgery and the removal of his fifth rib, the metastatic lesions caused by the lung cancer were growing, compressing his spine. The compression would cause Rob to lose the use of his right leg by the end of December, making walking impossible. He would be admitted to Morristown Hospital on December 30 and remain there until January. The neurosurgery was to help him walk again. We could not know that less than eight weeks after the spinal surgery he would be dead.

The oncologist had told us that Rob's prognosis was good. You're on the right side of 65. He explained how Rob would not have been cleared for spinal surgery had he not had a prognosis of a year or more to live. I remember thinking how much living we could pour into the next year and how possible it all suddenly felt that Rob might actually be able to live with this cancer given the new treatments he would be starting in a few weeks. The new drug, Opdivo, that Rob had been cleared to take, looked so promising. How smart we all thought to enhance and then use the immune system to fight the cancer rather then replace the immune system as was done with chemotherapy.

At the end of the surgery I watched as a slight smile spread across Dr. Chun's face as he approached me. He explained that the surgery had gone well as he was able to open more space than he thought initially possible between the metastatic lesions and Rob's spinal chord. I thanked the surgeon, shaking his hand and watched as Devon, Robyn, and Jane each shook the surgeon's hand as well. We were so hopeful and I recall saying to Jane, "I want to remember this feeling when things aren't going as well."

II.

Less than a week later, Rob was transported to Kessler Rehab in order to begin the process of learning how to stand and then walk again. We were delighted while Rob was in the ICU recovering from the surgery that he could begin to feel slight pressure on his lower leg.  He would remain at Kessler for a little more than a week and then on a Sunday evening after a January blizzard he would be transported back to Morristown Hospital as he had spiked a high fever, was delirious, and the doctor at the center could not determine what was wrong. We would learn by 3 a.m. that Rob was suffering from another staph infection--the third one in 4 months. This time it would be his Picc line that would be the source of the infection. Rob would remain in the hospital until his discharge from the Palliative Center in mid February.

III.

In early February, on our son's 17th birthday, Rob was scheduled for his first Opdivo treatment. Because of insurance issues, Rob was not able to get Opdivo as a patient in the hospital. So he was discharged that afternoon and taken to the cancer treatment center which is located at the hospital. The plan was for him to get treatment and then to be transported to a subacute rehab nearby so that he could continue rehabilitation. By the time Rob arrived at the cancer center though, he was spiking a fever. No treatment could be given and he was quickly readmitted to the oncology floor. By 5:30 that night his fever continued to rise, he was no longer alert, and his oxygen level continued to fall, even though he was receiving oxygen through a nasal cannula. By 8 p.m., after another chest x-ray had been taken and more blood tests were taken and analyzed, an attending doctor motioned me to step out of Rob's room. In the hallway he quietly asked whether Rob had an advanced directive.

An advanced what?
An advanced directive, a living will. Has your husband indicated if he wants life support provided? 
He hasn't made an advanced directive, but he wants to live. He's doing all of this because he wants to live. I want him to live.
Both lungs are filling and the antibiotics he has been getting are not effective. We're not sure why he isn't responding. It could be the spread of cancer, pneumonia, a pulmonary embolism.  We're concerned because his oxygen level continues to fall. We don't know if he can make it through the night without intubating him. 
Do you mean putting him on a breathing machine?
Yes, he might need to be intubated. 
Today is our son's 17th birthday. His dad can't die on his birthday. Do you understand?

Devon celebrated his birthday at home alone and Rob was transported to a step-down unit so that he could be cared for by a full time nurse and so that his oxygen level could be monitored 24/7. He also was switched to high-flow oxygen which he would remain on, until he came home.

Rob would make it through the night, his lungs would mostly clear, and it would be the next week, after a cat scan was taken that we would learn that his illness was now terminal. Gone was the one-year prognosis. In its stead, was the raw knowledge that while Rob was waiting to fight the cancer, waiting to recover from thoracic surgery and then spinal surgery, waiting to recover from three staph infections--the cancer was spreading to his sternum, his left lung, his ribs, liver, and spleen.

#SOL16: Saved Voice Messages

Want (M. A. Reilly, 2009)

Everything was as it should be, except that it wasn’t. We were living in two worlds. The old one, which never seemed more beautiful, had not yet vanished; and the new one, about which we knew little except to fear it, had not yet arrived. From Afterword by Carole Blue (Hitchen's widow), p. 97. (From Mortality by Christopher Hitchens)

I miss Rob's voice. I have kept a dozen quick messages he sent to me between January 11, 2016 and February 12, 2016 saved on my phone. All of the messages were sent in the early morning and I realize now that Rob was less coherent by evening, even as early as December and so he had stopped phoning me later in the day.

Now that he is gone, I sometimes take out my iPhone just to listen to him speak. I get through 2 or sometimes even 3 messages before I am crying so hard and loud that I can't hear his voice. I don't listen to the messages in order as the idea of a narrative would be too much to bear. Rather, I select random messages and even though I don't want to, I still can hear his death approaching as the weakness of his voice increases. By the third week of January his voice is weakening. In that message I hear him say he is scheduled to have a cat scan later that day. I don't recall being startled or even concerned by this when I first received the message that January morning. Truthfully, he seemed to always be having some type of test of other. What I did not know was this test would reveal the spread of cancer to his sternum and right rib.

And even though the January 28th message is difficult, it is the first message from January 11th that mostly stops my heart. It's the one where Rob tells me the oncologist was just in to see him. "We're in good shape," he tells me with such conviction I can't help but believe him, even now months later when I know that we were in poor shape, knocking-on-heaven's-door-shape. Rob asks me to put a reminder on my calendar to call to the oncologist's office by February 1 in order to set up a chemo appointment for that week. It is an appointment that I will never make. He closes the one-minute conversation by saying, "We're about to begin the real race."

How prophetic.

On that morning his voice is still strong, determined. He does not know that in 30 days the same oncologist will tell us that the cancer has progressed, metastasizing to Rob's sternum, ribs, spleen and liver.  There will be no more treatment. Opdivo, the wonder drug, he had been scheduled to take instead of chemo the week earlier but could not because of a fever will not be given now as he likely would not survive the treatment nor would the treatment have enough time to work.

His case is now terminal.

Would you consider being on life support? the doctor asks.

Immediately Rob tells him he will not be hooked up to a breathing machine.

A couple hours later as we wait for my brother to arrive with Devon, a young resident comes in to make sure we understand that Rob's diagnosis is terminal and that he has a week to four weeks to live.

Five days to four weeks to be precise is what he tells us.  He will repeat this several times as if repetition best ensured successful completion of a given task. At some point during one of his repeats, I ask him to leave. "You aren't helping us," I say as kindly as I can muster. What he doesn't know is that we are all so far away from that room, waiting for our 17-year-old son to arrive so we can tell him that his dad is dying and there is nothing left to do medically. We will be breaking his heart.

The end when it came was so final. So declarative. More so than anything I have ever known. I don't have words to convey the difference between the moment before death and at death is like. I held Rob's right hand and Devon held his left hand. 40 minutes after Rob died, Devon still sat there, bent over his father's body, clutching his hand. 

#SOL16: Reading Walter Benjamin

Rob in Intensive Care in January 2016, reading Walter Benjamin

Across from me, on a bookshelf is the last book Rob was reading and writing about before he became too sick to do either--6 weeks before he died. He had spent most of the fall and early winter reading a number of texts by Walter Benjamin and making copious notes about these texts and his thinking. My husband, the scholar. In January Benjamin's One Way Street and Other Writings was what he was mostly reading and thinking about and it is this book that I find on a book shelf in our home. And though we never discussed this outright, I knew he was reading and writing such dense text in order to save his mind.

Save his mind.

100 days in hospitals can kill more than just your spirit. It is a mind killer.  In addition, all of the narcotics used to curb the increasing pain from the spinal lesions and then the rapid spread of the cancer from his right lung to his left lung, his sternum, ribs, spleen and liver also undermined his capacity to think.  Reading Benjamin helped him to hold his world a bit more steady, to remind of him of the future he thought waited for him just beyond the cancer.

Reading and writing showed Rob's determination to live connected to the world and to not let the illness diminish his life. I think about this in light of the national interest, if not global interest in best ensuring literate learners. Today, I retweeted Noel Drew's (@Drewedu) tweet based on Neil Gaiman's insights about reading.

And then commented:

When I think about Rob's reading and writing life, I know it was these behaviors that helped him to keep positive and negotiate the difficulties that arose after his diagnosis. His intense love of reading and writing developed alongside the agency he felt in choosing when, what, and how to read and/or write. 

#SOL16: A Broken Toilet

Rob at home, late November, 2015.

We were so hopeful.

Tonight I read one of the notebooks Rob kept right after he was diagnosed through the end of December. In this notebook he chronicled the medications he took and the time of day, his daily vitals, any procedures he had scheduled for the day, fentynal patches and when they needed to be changed, physical problems he was experiencing, where he was physically (at home, hospital), people who were visiting, and every now and then a few notes about things he wanted to remember and things he thought were important. Each entry was dated.

As I read, I noticed that Rob remained hopeful until his capacity to walk was threatened. The breaking point happened early one winter morning when he fell into a toilet, breaking it. It was three days before Christmas and I recalled grabbing him to to break his fall, checking him and then getting him up and back in the transport chair before I wheeled him out of the room. I then turned off the water and made sure he was okay again. I cleaned him up with new clothes and resettled him in the living room. And then I returned to the bathroom to clean the floor. It was just a few minutes after 6 a.m. I can't recall who called the plumber, but I'm guessing it was Rob. By 8:30 a.m. we had a new toilet and the name of a handyman who I then phoned. He came to our house the next morning to install a handicap bar in the bathroom and refused to accept any money because his wife was battling breast cancer and he knew.

And even though I thought I had done a good job of reassuring Rob who was both embarrassed and scared, I read tonight that he was most worried about me. "Mary Ann has to do things she should never have to do. I can't even clean myself up. I tried and almost fell again. I need her help for everything."


What neither of us spoke about was that Rob's capacity to stand and support his weight using his right leg was getting progressively worse.  So worse that in a week he would no longer be able to stand. What we didn't know was that he would never stand again. He would never walk again and this incapacity would return him to the hospital on December 30 for a three week stay in the Intensive Care Unit followed by a week on a post surgery floor, 9 days in rehab and then back to hospital with another staph infection flowing through him.

My husband left home the morning of December 30, 2015 and would not return home for 50 more days. When he finally did come home in mid-February, it would be to die.

We were so hopeful, once.

#SOL16: Rattle

Rob Teaching Dev How to Use the Camera in the Muir Woods

I know he is nearing the end as I listen to the insistent rattle.  Last night a nurse from Hospice came and helped Robyn and me resettle Rob after he awoke, choking on the congestion from his lungs. Rob's blood pressure has dropped so that the nurse could not read it. Now six hours later, there is just the insistent gurgle--almost as if this was some internal clock, ticking, ticking.

This man, my beautiful husband has suffered so the last 7 months and even though I cannot imagine any future that does not involve him, I also want him to find peace.

Too much suffering.

Too much.

When my mom died it was a too beautiful morning in May.
Now 16 years later, it is a too beautiful morning in March.

#SOL16: Tea

Rob in the driver seat

I.

This morning I go to make myself a cup of tea --Irish tea--and that sick feeling swamps me and I leave the tea undone.  How many times during the last six months have I made two cups of tea instead of just one for me?

One cup for Rob, the other for me.

Tea has been a source of comfort for as long as I can remember. And now as I sit here I realize that it is not the tea so much that comforts,  but rather the stories and talk that seem to accompany the tea.

Now, I will never make him tea again.
Never again.  For 28 years, we have shared tea and now that is over.

II.

The nurse from Hospice arrives and tells me that Rob's blood pressure is 70/40 and is heart rate is accelerated.

Is that why it is so hard to rouse him?
Yes.

My beautiful husband is beyond my reach but not my voice.  All morning I have been talking with him, to him. Since 3 a.m. he has been curled in the bed towards me with the covers wrapped around him. He does not move. And perhaps I want Rob's dying to be more Hollywood-like, less real, less prolonged.  His breath for these last hours have been five quick raspy breaths, followed by silence and then repeated. Every now and then there is a soft or at times a rather loud moan and then silence.

Silence.
Silence.
Silence.
No breathing.

And now the breath is less raspy, softer.

III.

Perhaps I am numb. I can't recall when I slept more than 3 straight hours. I can't leave him. The thought of this planet moving along without my sweet, sweet husband undoes me. Against everything rationale, I still held hope close that I could save him somehow--that a miracle could happen.

My beautiful husband is dying.

#SOL16: Approaching

Rob and His Son (2016)

I.

There are stages to death. And I suspect there are differences between what I read about these stages that are mostly based on the elderly passing from the earth and what happens when a younger person dies. Nonetheless, I can see the signs when I look at  Rob who is leaving this earth much too soon as he passes into the active stage of dying.

My body seems to recognize this finality and before when I turned to doctors and nurses to guide me to understand what was happening to Rob, oddly now I don't seem to need a guide.
My husband tells me he is leaving with each prolonged breath.
Each rough breath.

Now he sleeps most of the day and is harder to rouse. Even in the evenings when he is usually restless, he is sleeping more. He now has trouble swallowing and I use the bottom of a hypodermic needle to give him sips of water and use my finger to wet his lips. After just a few sips he refuses more. And before this day ends, he will refuse water.

II.

The times when he is more fully awake, he stares beyond me at something only he is seeing. His face is euphoric, beautiful, other-worldly.

#SOL16: Found - Rob's Words

A notebook entry from Rob. 1.20.16

I.

This morning the house is very quiet. Rob's mother left yesterday to return to her home in Florida. My son and our guest, Robyn are each asleep upstairs.  Rob has been sleeping soundly and wakes briefly. We talk a bit. Rob is so weak that his voice is hard to hear, his words difficult to discern. But when I ask, "So, you'll help me to cross over when it's my time?" He is quick to respond, "Yes. Get my brown bag."

I return with Rob's briefcase and put it on the bed near him so he can see it.  He is too weak to handle it.

"Get my writing out."

I show him his iPad, thinking he may have written something on it. His computer. And he shakes his head, no, each time.  At the bottom of the bag I find a small black Moleskin notebook. There isn't much written in it, but there is a prose poem/observation on the first page.  It is dated, 01.20.2016 -- 2 days before the snow. I realize now that he wrote this after I had left that morning when we ate breakfast together. I show him the book and he smiles, settles a bit more and falls back to sleep.

III.

What Rob can't know is that in four days from the dated entry he will be transported back to Morristown Hospital from Kessler Institute in Saddle Brook, NJ. I will call the nurse's station that Sunday afternoon to tell them that something is wrong with Rob.  He is not responsive when we are on the phone and I have tried to talk with him all morning.  Since Rob was hospitalized back in the end of August, I have not missed a day seeing him when he was away from home. Saturday, the day of the blizzard, was the first time I couldn't get to him and so I am anxious at his inability to hold a conversation.  Meanwhile, Devon and I can't get the snow blower to work so we are digging out after the blizzard using shovels, with Dev doing the heavy lifting.  I repeatedly call the nurses as my concern rises as the day moves along.

Rob is just not Rob.

Finally at 7 p.m. a doctor from Kessler will call to tell me he thinks Rob has a urinary tract infection and that he needs to be treated at a hospital. After a bit of back and forth, the doctor agrees to have him transported to Morristown where Rob's doctors practice.

Devon and I leave home for Morristown and because it is the night after a blizzard, the highway is fairly empty, but the emergency room when we get there is packed.  By 3 a.m. we learn that it isn't a urinary tract infection that has raised Rob's temperature above 102 degrees and has him delirious--but rather another staph infection. This time it is the Picc line that is infected.

The first staph infection was caused by a surgeon at a different hospital placing an infected port into Rob's chest back in September. The second staph infection happened because Rob had not been cured of the first and yet cleared by the infectious disease doctor at that hospital to have his first chemo treatment. Within 6 days of the treatment, he developed a massive abscess in his chest--one I was told by the thoracic surgeon was dangerously close to the right ventricle of his heart. He lost his fifth rib during that surgery. The infection had mostly eaten through it.

IV.

As Rob sleeps, I read his writing, piecing together that this poem in some way may be his answer to the question -- how do we cross to the other side. Perhaps and yet perhaps not.  It hardly matters. What does matter is to be of one mind with him through his words.

 Here's what he wrote.


The old lady's forward movement
opens a crease, a small line of
organized light--a slip of
space just enough for a 4 year
old hand to slide a hand in and hold--
What is this? There's nothing 
to hold but this hand is filling
with ______what? Cold, trickles
over hands and with a mind
of its own begins to bend
around hands now wringing
as if under a faucet flowing

V.

Since 1985 Rob has kept a notebook.  Such treasures awaits us.  I think beyond today and take some small pleasure in the reading I will do after he has left.  His words will live on.

#SOL16: Go Rob. Go, Love. Go.

Rob

Rob and Me (Dev took the picture)

From across the room I cannot tell if you are still alive. I feel the press of death here in our home as I exhale with you, perhaps for you. During those 40 seconds when you were not breathing I stood still looking, looking, urging, urging you--Take a breath, Rob! Breathe.

Your breathing is marked by periods of no breathing at all, followed by deeper, faster and raspier respirations. And even though I know your breathing has taken on Cheyne-Stokes respiration, this knowledge does not relax me. Now I can imagine you not breathing, not returning to me.

I have told you it's okay to go. I have been gallant. Correct. But I lied.


Now as we edge closer to your death, I don't want you to go away from me forever. I want you to live, to defy the odds, to stay with me. To stay with our son who is only 17. Just 17 and you are leaving us. We are too sad without you. I know how much you love me and that you would not want me to hurt like this.

And even as I ramble this rant in my mind, I know that I can't stand to see you hurting. I never could even when it was me hurting you. And over these decades I surely did that. Seeing you living in that bed, unable to walk, to breathe with any ease, to sit up without the help of a mechanical bed that raises and lowers your head, your legs. And now, your legs are bird-like. I'm guessing you have lost 75 pounds since August. Your cheek bones are sharp now. The Rob I know is slipping fast away even before your last breath comes.

Go Rob. Go fast. Go, love. Go.

#SOL16: Like a Faucet Turned On

Photographs We are Keeping Nearby Rob

Today, I have been reminded of the immense loss I will feel when Rob dies.  Every point in my life is connected to him. Every one.  From things as mundane as the food store, the diner he frequented, the dry cleaner, a former students now finishing at Reed College. Everyone in each of these places asks, "How's Rob?"

At the diner, the waitresses cried when I told them he was at home in Hospice care. One said, "I've had so much loss this last month. I can't take this. He was so robust. So full of life." She could not take our order at first as she started crying and excused herself. Another waitress who tried to help next asks and after I tell her she says to my son, "You need to help your mother through this." When our waitress returns she wants to send home some food for Rob and I explain that he has stopped eating and she excuses herself again as she starts to cry.

Our dry cleaner yells, "No. That just can't be." Our friend, Mo from a local taxi service texts me, "How is Mr. Rob?"  He too expresses disbelief that someone as vital, as loved, as essential as Rob could be dying. "That's not possible." At the food store, the same man who waited on us most mornings when we would run in to get some treat to bring to a client's, tells me,"I'll pray for you and your son. Such a fine man" A neighbor who just sold her home and is leaving to relocate to Florida embraces me this morning in the street as her new husband waits in the car. "I can't believe it. Not Rob." 

But it is Rob.  It is Rob It is. My husband who loves widely, forms relationship with ease, and genuinely loves others. How could this have happened to him?

There isn't a day that goes by since he was first diagnosed that I don't sob several times throughout a day. The feelings overcome me and it's like a faucet turns on full pressure. Mostly though I am either numb or sick to my stomach.  The one place I find consistent contentment is when I sit next to my husband's bed, write, and wait for him to wake up, turn to me and say, "Kiss!" 

#SOL16: Dear Rob

Rob at 34.

A letter to my husband that I will read to him when the time feels right. Or perhaps this letter will find its way to a parallel universe where Rob will read it and recall.

Dear Rob,

It's March. I did not think you would see this new month begin. This morning I am oddly thinking about the end of my dissertation, recalling  the Edward Said quote I closed the work with. You know the one where he writes that we are well past the beginning before we recognize it as such. That feels important somehow, although I couldn't say why. One thing, of many, you taught me was to trust my tacit knowledge. I know more than I can say and these months supporting you as you battled cancer and now accepting death have taught me that again.

Me at 35

This morning, as I sit next to you I am sipping tea and watching you sleep. I hear the soft repetitive moans you make as you breathe and I know you are working through leaving--and it is so much harder than I had thought. But how could we know? We who have been so busy living fully, loving sweetly (and not), raising Devon. Is it any surprise that we did not stop to wonder about death; to speculate about endings save the one way off in the future when we were both very, very old? And perhaps that has been for the better.  Had we known that you had less than 2 decades to live when we adopted Devon, how might that terrible knowledge have colored us, shaped what we valued, loved, failed at? Would we have been the risk takers we are? The parents we are? The lovers and friends? I suspect not and it's hard anyway to think of you as conservative or cautious.

I want you to know that I plan to use images I make from your many notebooks in new art collages. I am hoping you would approve and think you would. Making, I was recently told is how I will survive your death.  That and being a mother.

These last two weeks where your hold on the earth has been less tethered have been difficult. And just when I think I have lost you for good--that you have truly forgotten me, forgotten us, forgotten where you are--you wake and motion me to you, take my hand, and tell me, "I love you so much. More than you can know." You tell me to protect Devon, love him for you and though I think I have loved you so greatly before, I find that my love for you grows even more.

These last few months watching you valiantly live and struggle to die have been the most significant of my life. You humble me.

Your wife,
Mary Ann

#SOL16: Dear Friends and Relatives

This is a poem Rob wrote after he received an email from a friend/sister, Marilyn Harrison, last spring. I found the poem on his laptop and wanted to share it. Rob grew up with Marilyn and her sister Joyce in Brooklyn. Marilyn died from cancer on July 12, 2015. When Rob wrote the poem he had no way of knowing that he would be diagnosed with stage 4 lung cancer a month after Marilyn's death.

Dear Friends and Relatives

today, i'm stuck

an old friend 

has written an email—

well

not a friend exactly, something 

else, more on the order of

an almost sister

i never see anymore

my mother's best friend's 

oldest daughter, 

my age, my contemporary

estranged

& sick

progressed, she says

putting my affairs in order

in my own satisfying way

induces cascade failure,

a widening cataract of

incomplete stories

accelerated by gravity

a few days later, 

a phone call

& the rest of the story 

is out

yeah, we'll get together

i think, 

& about a month from now

maybe we will—

i'll fly out to san fran

and spend a few days

tracking  haunts

i've never visited

as if this accounts

for what's being lost

& then what?

i'll have to leave 

& we'll both know

i'm  likely not coming back 

save maybe one more time

but for those few days

we'll remember all kinds of 

childhood stories, tell ourselves

others that fill in blanks

with the kind of honesty

that comes with 

the clarity of finality—

and then we'll tell the rest

           

the ones meant to soften

the truths 

our lives no longer 

intermingle

save 

for occasional news

we'll no longer get

& though we'll mourn 

what never was

in those farewell moments 

i'll  turn away

from that all

to get on a plane

& fly home

to what i left to come here:

an ongoing life,

a wife, 

a son, 

& who knows what

while she'll have left here

all to go back home

& lie in the quiet 

down of a who knows when

forgotten morning 

too soon come

#SOL16: Language

Toward the Light (M.A. Reilly, Massachusetts, 2014)

I.

It's later in the evening. The bedside lamp shines soft against the blinds. Sometimes I can almost imagine that I am with Rob before the diagnosis, before the end was closing in. I watch as he angles one arm above his head and notice that he looks deep in thought. How many times have I seen that look?

And so I am surprised when he asks, "What language do you speak here?"

Or at least that's what I think he says. Partial lines, single words, sounds--these comprise his speech. And even when I understand the phrases, the context is often obscure, unknown.  The single exception is in times of high stress, such as when he feels pain. Then, Rob re-finds our common language. For example, a few days ago a nurse was finishing a procedure on Rob and it hurt him.

"Mary Ann!" he yelled. "Mary Ann."

I was so caught up in soothing him and hating that he had any pain that I failed to notice what Jack noticed. Rob was lucid, cogent. I realized he was right. Rob, Jack, the nurse, and I were engaged in a conversation.

II.

A few hours later I watch as Rob takes the pencil-like sponge from my hand and uses it to simulate drawing a rectangle on the blanket that is covering him.

"Ten inches this way. Twelve inches that way. Ten more and another twelve. There. A screen. Now I can watch the game."

At a more cogent time, Rob told me to search for him at Star 50 after he dies. All of that day I thought about the language from Walt Whitman at the close of Song of Myself,

"...Failing to fetch me at first, keep encouraged,
Missing me one place, search another,
I stop somewhere waiting for you."

Very early this morning, Rob looked up at me and said, "I'm so glad you found me."   I look at him now asleep, his breathing a mixture of rapid shallow breaths and breaths with pauses so large you could park a universe. My husband is composing worlds to help him leave the place he is forgetting to get to a place he must soon go to.  A place, where he will wait for me.

#SOL16: Hey Candy Girl

Rob and Devon on the shores of Loch Ness

I.

"Hey, Candy Girl. You better move closer."
"Why?"
"Took you half-an-hour to get here."
"A half-hour?"
"Yeah. Move closer."

It's 4:30 a.m. and Rob's overnight caregiver needs help. I have traveled from our upstairs bedroom where I had been sleeping to our family room to find Rob restless in the hospital bed.  Since he has returned home I have not had a full night's sleep mostly because I first took care of him by myself and later because the night aides need my help to move him and now to change him. Each phase towards death results in new needs for all of us and the same persistent want.

Tonight I am Candy Girl. Yesterday, Rob asked his mother where the Queen went.

"She's taking the Prince to school."
"Oh that's good. She'll be back."

Even though Rob can only say my name at times when he is most vulnerable and feeling pain, he knows me.

II.

There's an abundance of sadness here so thick and constant that I have little else to do but understand that I am mired in it and accept this. This acceptance is humbling. Yet alongside that pressing sadness, there is also something oddly beautiful. My husband in his movement towards another world is composing a new world in front of me. Now and then he invites me and others to enter that world. Now and then he demands entrance.  And it's an amazing world--one in which Rob seems to be busy tinkering with things as he turns handles, adjusts levers, opens windows, opens doors, transforms the off-white blanket that covers him into a video screen so he can watch the game. Even as he edges towards death my husband is still rooting for the Giants.

Earlier this week a chaplain came to visit and she told me, "Don't let this disease cheat you of this time with him."

There's such wisdom in those words.

#SOL16: Fissure

Light (M.A.Reilly, 2014) 

It's dinner time and a neighbor has brought us homemade Stromboli and salad. My brothers, Rob's mom, Dev and I are eating together. When I open the refrigerator to find salad dressing, I spy the bottle of Russian dressing on the bottom shelf and my throat closes. Closes. Tears well and I know I'm going to break down a bit. This is the way it is. It is the small, inconsequential artifact that is all Rob that undoes me most these days. I have been so busy caring for him, that only now when I chance his favorite salad dressing or some other silly reminder of our life, of him that I sense the enormous chasm his dying will create. Sometimes this happens while I'm driving. I'll have a flash of something we used to do and know we will never do it again and the feeling that overcomes me is so large, so heart-stopping and powerful that I don't cry, but I actually scream.

Loud. Continuous. Scream. And then I regathering myself and resettle.

I move through each day mostly in shock. I find eating difficult as my stomach feels continuously nervous. The kindness of others makes me sob immediately. I can no longer remember what happened the prior day and I find being busy with physical tasks offers the best respite, save the time I spend with Rob. I am with him while he is awake and then many, many hours while he sleeps, or  rouses for care. Sometimes this involves bathing him, feeding him applesauce, bringing him water to sip, helping him to change clothing. Other times we chat and I try to understand what he is saying. Many times we are just quiet. Now and then I read to him. The other night I read the first chapter from Joyce's A Portrait of the Artists as a Young Man. We laughed at the moo cow coming down the road and early in the reading he fell asleep.

I watch him while he sleeps. Run a finger along his hairline, softly brushing back his hair from his far head. Now and then I make images of him with my phone. On Valentine's Day, I recorded a two minute video of him. I have saved his voice on my phone but can't bear to listen to any of the dozen messages he left for me starting on January 11 and running through February 12--the last recorded message he could leave.

Even as I gather all of this and hold it close, I know none will fill that chasm, heal this fissure that has only begun to crack open.

#SOL16: I Want to Hold Your Hand

The Love Letter (M.A. Reilly, 2014)

I. 

Sometimes I think the way Rob and I hold hands is its own form of Morse Code. A light squeeze means, Hello, I'm here. A firm squeeze suggests a strong definition of love. A holding on well beyond a 5-minute mark suggests a desire to heal. Holding hands while using a thumb to lightly rub suggests a desire to comfort.  For the last 6 months, we have learned new ways to communicate--ones that have arisen alongside emerging needs and drama. So it wasn't so strange that this afternoon while Rob and I were holding hands that we ended up singing a more ballad than pop version of The Beatles, I Want To Hold You Hand to one another.

And when I touch you  

I feel happy inside  

It's such a feeling 

that my love

I can't hide,

I can't hide,

I can't hide

II.

Our song fit into an afternoon of song.  I had gone upstairs at noon to sleep.  The last time I had slept was Friday evening and I was dragging. An hour later I came downstairs and Jane was all laughter saying to me that "I just had to hear the sing along" they had going. And there surrounding Rob who was sitting upright in his bed were Jane, her husband, Robyn and my brother, Jack. Jane had her laptop open to YouTube and as one of them would suggest a song, Jane would quickly find a version of it, hit play, and the group would then sing--none of them actually knowing all the words. Rob was being dopey and the group was so very pleased with itself.

III.

Love finds expression in the raw timber we have available.

#SOL16: Protect His Death

Rob's Hand (M.A. Reilly, 2016)

I.

Rob has always adored our child.  He still does. But as his illness progresses, he is acting in ways that are at times both gruff and cool.  At first this was directed only to me. But earlier today, Emily was lightly rubbing Rob's shoulder--trying to soothe him--and in front of others, Rob curtly said, "do not to touch me."

We are a family who touches. We have taught Emily that and I watched as her face shuttered closed and she left the room. A little more of my heart broke, knowing she was hurt. Later we would sit on her bed and she would let me hold her as we talked about why her father was withdrawing.  It's one thing to read about the stages of dying and quite another to experience them via your husband or your dad.

II.

Dying is a complicated matter, especially when for months there has been an active fight against it; a herculean effort to curtail its progression.

Surgeries. Radiation. Late night prayers. Chemotherapy. Antibiotics. Transfusions. Bargains with God.  

Now death reveals itself as the natural end and I feel as if I have been turned upside down. I now understand that my initial reluctance to give Rob morphine every 4 hours had more to do with my reluctance to lose him.  I still want a miracle.  Morphine is an odd kindness. It soothes him, eases his pain. And Rob is a man in need of soothing.

Later, as our friend, Michael,  makes a cup of coffee in the kitchen, I talk about some of what I am realizing and how we all worked so hard to protect his life and he says to me, "Now you are working to protect his death, his dignity."

Protect his death.

Yes, there is that. I only have to remember  these last few weeks in the hospital to understand what protecting his death might mean and the travesty that forsaking its protection would render.

III.

We are twisted in each other's lives. More möbius strip than straight line. More Klein bottle than jug.

And so is it any wonder that Emily and I feel so lost, so lonely, and yet we so deeply love Rob that bearing his pain, privileging his comfort above our desires, and witnessing his end is honorable, right, and necessary.

And still the pain steals my breath.