#SOL16: Donate Now

I.

Some memories are less event-based and more the result of a recalled behavior. Early this morning I made a cup of coffee and as I went to sip it I realized that Rob who loved coffee would never taste it again. There's a pain to these simple truths, a pain that rushes to the heart. This is what grief feels like. A sudden stabbing,

A year ago I woke up ready to take my husband to chemo. This would have been Rob's second treatment and we were anxious to see it happen. Having known only delays because of staph infections, I was worried that the cancer was progressing. Nothing my son or I tried that morning could help Rob to stand. And we tried. He simply could not stand any longer. After 60 years of standing up, my husband could no longer do so and he would never again. Later at the hospital we would learn that the spinal lesions were compressing his spine.

It was still early morning when Rob was taken by ambulance to the hospital. As we waited he cried. I can't recall having seen Rob cry but on that morning he did. He told me he feared he would never come home again. It would be 50 more days before another ambulance would return my husband to our home where a few weeks later he would die. Four months earlier we were planning a trip to Maine unaware of the stage 4 lung cancer rioting through my husband's body.

Lung cancer devastates with its quickness, its exactness, its cruelty. By the time it reveals itself, it is so often too, too late.

II.

My son tells me that a cure for cancer is three years away. Upstairs in our home a dedicated computer runs 24 hours a day. This is a computer Dev built a few years ago and then set up so that medical researchers could use its power when joined with others to perform the massive calculations necessary to exacting a cure. He gets updates now and then as to the progress being made.  Our computer is dedicated to cancer research.

I take comfort in the idea of a cancer-free world. I take comfort in the thought that others will not need to go through the grief that so many of us know by heart and by name. At the turn of the last century when my grandmother was a young girl, 1 in 14 contracted cancer.  By mid century, the time my parents welcomed home my older brother, the odds were 1 in 10.  In this calendar year the odds have grow more deadly. Now, 1 in 3 will contract cancer.

1 in 3.

Before 2016 turns to 2017, I hope you will join me and donate to cancer research. This touches all of us. You can donate here. 

#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: 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: 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: Food

Rob with my brother, Jack early one morning.

I.

The bony shape of Rob's shoulder sticks out of the hospital gown. It looks more like a small child's knee than a grown man's shoulder.  This is what happens when eating ends.

It has been ten days since Rob has eaten food. Ten days that as his wife I have watched him not want to eat and I have not forced the issue as it is my issue--not his. Rob turned away food beginning on Saturday, February 20.  The last meal he ate was breakfast the morning of February 19.  I made him an egg sandwich on corn rye toast--a favorite of his and he ate about half of it.

Each day I eat food I feel sick. When I listen to family and friends eating in our dining room I sometimes feel nauseous. I know this is irrational and I understand that the body rejects food as it is dying. I can read and comprehend that, but somehow when it is Rob and not some anonymous body, my understanding falters.




II.

In one book about death and dying I read the following:

from here: http://www.areaofficeonaging.com/ECHO3.pdf 

Each phase of dying brings tensions and sadnesses that are hard to name and even more difficult to hold. But hold I must. Bearing witness to Rob's last days is the greatest of challenges and also the most necessary.  How might I help you to be more comfortable? That's the main question these days.

#SOL16: Small Dignities

An Offering (M.A. Reilly,  Ringwood, NJ, 2.17.11)

I... I am watching you sleep 

It's the promise you've made 

What I find I can keep 

Oh I...want to swallow the moon 

Give a smile back to you 

Light your way

   - Melissa Etheridge 

I.

These days Rob sleeps 21 to 22 hours for every 24 that pass.  So I find myself watching him sleep. He hates the oxygen that feeds in through his nose and now we use it only when he is fully asleep. A minute ago as I tried to fit it into his nose, he lifted his hand to bat it away. I apologized and removed it and he resettled.

Small dignities for the dying.

And perhaps that is the lesson he teaches me this morning as I watch him sleep.  It isn't the grand gestures in life that matter most, but rather the small dignities we afford one another.

II.

One of the first things to be tarnished during a long hospital stay is one's dignity--one's self-respect. Most of Rob's doctors (and there were scores) attended to the patient well, but most only tangentially noticed the person. This was especially noticeable during rounds. So often it felt like my husband wasn't of much importance, but rather was merely the vehicle through which a lesson might be learned or a problem solved.

There were some wonderful exceptions to this: his oncologists for sure, our family doctor and an Irish doctor who met Rob one night in the ER and although he was not his patient, sought Rob out across the many hospital room transfers to do nothing more than converse. No doctoring of the official sort. He and Rob discussed literature and he gave a book of Icelandic sagas to Rob.

Dignity after 50 days in a hospital is frail thing. And it ought not be.

I am trying to remember that. The man lying in the bed a foot away is not a patient and he has wants that clash at times with the prescribed course.

My husband still has wants. He is not all need.
How beautiful.
How necessary.

#SOL16: I Forget Rob is Dying

I.

There are moments inside each day when I forget that Rob is dying.

I turn to tell him something. Or I'm reading the opening of a book, like H is for Hawk, and I wonder if Rob has read it yet. Or I'm preparing dinner and I turn to ask him if... My response at these moments is always the same: fast sick stomach riddled with surprise. Yes, surprise. The world beyond is held in suspension. For that moment I don't hear, smell, touch or see anything.  I just experience the bottom falling out of my stomach and the sick sick sickness that accompanies the shock.

My God, Rob is really dying. He is, really. Really dying.

As I begin to reenter my body, I notice each hand shakes.
And it is only by holding my own hands that the tremors calm.

II.

I've decided that there needs to be some rules about dying.

1. You are not allowed to be planning a holiday and five months later be planning your husband's funeral.
2. You are not allowed to celebrate your 25th wedding anniversary and two days later your spouse is transported to a hospital where he remains for the next 50 days, before returning home to die.
3. You are not allowed to leave a 17-year-old son to make his way on his own.
4. You are not allowed to leave the earth before all those conversations you most need to have can be uttered.
5. You are not allowed to die on your son's birthday, your father's birthday, or your brother-in-law's birthday, on February 29.
6. You are.
7. You are not.
8. You.

#SOL16: A Litany

Rob before Treatment

I.

My husband didn't have a chance to fight the lung cancer that is killing him because he was too busy fighting multiple staph infections. Three staph infections in five months.  During that time, he received just two chemo treatments and one of those led to the staph infection that we had been told had been successfully treated running amok, settling the infection near the right ventricle of his heart and requiring emergency thoracic surgery and the removal of his 5th rib.

Grief (2/2016)

Rob has endured so much pain from the infections, the cancerous lesions on his spine, bone breaks, relentless tests, spinal cord compression,  multiple surgeries, the spread of cancer, and nearly 90 days away from home, away from all that is familiar, known, touchable.

With each new procedure,

Devon holding his father's hand (2/2016)

each new MRI,
Cat Scan,
blood test,
X-Ray,
Doppler ultrasound,
with each new blood culture,
each new surgery,
each bag of antibiotics,
each injection,
each transfusion,
each new needle in his arm, his thigh, his stomach,
each new pill to relieve pain: oxycontin, dilaudid, morphine, and lyrica,
each new fentanyl transdermal patch,
each new roxanol injection,
each new blood clot screen,
each dose of radiation,
each new arterial stick,
each new picc line insertion and removal,
each new port insertion and removal,
each cardiac incident,
each blood clot in his legs, his arm,
each new cancer fighting drug

                                                  --alongside these medical maladies and interventions,
                                                   
we were offered hope.

It is important that you understand that we were not being fanciful, imagining the best of outcomes. Was it not a month ago that we were assured that Rob would not have been a candidate for spinal neurosurgery, had he not had a prognosis for at least 6 more months to live?  Was it not a month ago that we were assured that the cancer was not aggressive?  How then did it spread so quickly to Rob's sternum, ribs, liver, spleen? How did we end up hearing 4 weeks later that nothing more could be done?  How in the space of 28 days did his life expectancy change from greater than 6 months to a couple of weeks?

II.

Doctors, even the finest ones, are mere mortals like us.

III.

In A Grief Observed, C.S. Lewis captures this sense of false hope well. He writes,

"What chokes every prayer and every hope is the memory of all the prayers H. and I offered and all the false hopes we had. Not hopes raised merely by our own wishful thinking, hopes encouraged, even forced upon us, by false diagnoses, by X-ray photographs, by strange remissions, by one temporary recovery that might have ranked as a miracle. Step by step we were ‘led up the garden path.’ Time after time, when He seemed most gracious He was really preparing the next torture" p. 30.

The next torture.
That so aptly encapsulates what Rob has endured these last five months.

IV.

Sometimes late at night, as I sit in the chair beside his bed, listening to the putter and puff of the oxygen machine, I find myself wondering what might have been had that infected port not been inserted into his chest on that Monday in September. Or if that surgeon had spent a bit more time and followed up instead of missing the signs of infection.  I wonder where Rob might now be if the first staph infection had been treated completely so that when he received his first chemo treatment, the infection didn't result in a massive abscess.

What might have been had we opted for no treatment? 

#SOL16: The Familiar Falling Away

The Familiar Falling Away (M.A. Reilly. Devon in Ringwood, 2011)

I.

Today the wind is fierce: a howling menace whose wildness is oddly attractive. It says anything can happen. 

The weekend's frigid weather has turned unseasonably warm and today finds a balmy 60 degrees beyond our front door. It's mid-February and rain falls at first intermittently and then steadily all day. The three front steps were partially covered with a thin veneer of ice this morning. I used the ice scraper Rob always keeps by the door to break it up so that the Hospice delivery could occur.

My life these days is mostly filled with attending to small details. Taking Dev to school. Arranging for friends who are coming in to stay. Figuring out when to go to the hospital. Figuring out how best to get Rob's mom to and from the hospital. Remembering to eat dinner. Doing the laundry. Vacuuming.

The one steady pulse that runs through all of these sometimes banal duties is the hope Rob will be home tomorrow.

II.

Rob Painting. 2.15.16

My home which has always been such a solace feels more like an enemy these last few days. Everywhere I turn is a reminder of what I am losing, what is slipping from my fingers, my heart.

Ours is a house of books. A house of art. A house of play. Yesterday Rob began to feel anxious when the doctor explained how he would be titrated off the high flow oxygen and placed on a nasal cannula. As he waited for Xanax, I suggested to Rob he might want to paint. I had brought watercolor pencils, paper and brushes the day earlier. He agreed. A friend had left lavender essential oil (thanks Liz) that I applied to his temples and within thirty minutes he was calm.

In a 2011 study (Toward A Brain Based Study of Beauty), researchers Tomohiro Ishizu and Semir Zeki found that there was a 10 percent increase in blood flow to the part of the brain where joy is expressed when viewing a beautiful painting. I wondered if joy doesn't increase even more when art is being made, not only viewed.  Rob was calm and pleased by the time he finished painting.

III.

One sure thing Dev and I have learned is that we cannot know the future--be it ten minutes from now or a week. Tomorrow, we hope Rob will be home.  It will mark day 50 since he was last here.  50 days have passed and the house, like us, is unsteady.

Today the wind is fierce: a howling menace whose wildness remains attractive. It says anything can happen. 

Anything.

Anything at all.

#SOL16: The Ordinary

Dublin Waking (M.A.  Reilly, 2009)

I.

Rob's asleep and as I continue to hold his hand, I feel his grasp slacken slightly. I study the too thin veins in his hand--veins that have long ago collapsed as if they might offer me some code, some secret knowledge, some Gilead balm. I am memorizing each blue line--mostly rivers run wild--with my finger wanting this partial knowledge of his body to hold me in good stead for when his body is no longer mine to hold. I trace each cruel bruise left behind from a litany of needles and IV lines, and feel the adhesive left after the bandages have been removed.

There is something for me to learn here, I know. What it is, remains beneath the skin and I am so very tired, so very much alone. Leaving is so hard, but this is the way it is. Against so much uncertainty, the understanding that we are all mortal remains a constant.

That and well, love.

I I.

The middle of the night is the worse as I am 35 minutes away from Rob. Most nights I lie awake in the bed we have shared for so many years and text him, hoping he is awake too and will answer.

He no longer does.

Even after these last six months, I realize that I sleep only on my side of the bed, while his remains untouched. In the darkness, it's hard to stay in the here and now. My mind drifts--conjures what might be.

I call the nurse's station just to check about what can hardly be spoken aloud.
And the kindness of the nurse undoes me and I sleep.

III.

I rise early to find a text message from Rob: r u awake? Such joy to find his message. I check and see that Dev is sound asleep in his room, Rob's mom in another and downstairs a friend, more sister than not, sleeps too. Today is Valentine's Day and Rob and I have a breakfast date.

Superhighways here in the northeast at near dawn are more ghostway than highway. Even now, the promise of daylight lightens the darkness and the smooth cadence of tires on asphalt soothes.

I so want to bring him home.
I so want for him to know the deep rest that only home can bring.

#SOL16: Mind Body Spirit

At the Point (M.A. Reilly, England, 2012)

I. A Few Days Ago...

From across the drawn curtain comes Marlene's disembodied voice, "More water, Daddy? More water?" There's such tenderness in the question of a daughter to her ailing father. I sit next to Rob's bed, a few feet from the bed where Marlene's dad rests and notice a discarded cap and gauze pad, resting on top of Rob's chest, caught in a fold in the sheet. Bits of medicinal detritus, I think, left behind by a too-busy nurse who gave him an injection earlier.

There's a certain carelessness to institutions. I've seen this at any number of schools I've visited, especially when school personnel engage with parents, and now I know it to be true of hospitals too after months of being the patient's wife.  I arrived this morning while rounds were being conducted just in time to learn that the pneumonia Rob now has is not responding to the antibiotics. I had not know that.  I learned this alongside the residents and the others in the room. For Rob, with stage 4 lung cancer, pneumonia is no small matter. The attending explained to the residents that a lung biopsy which in cases like this is often done, would not be done given Rob's cancer. Rather, some type of steroid may be given after tomorrow. And then what? I think watching my husband's eyes close.

Sometimes it feels as if patients existed for little more than the convenience of practice by the attending and residents. Marlene will later say to me, "Sometimes I just want to yell at the doctors, 'Notice me. Here I am. I'm not invisible.'"

But aren't we?

I I.

Since the morning of December 30, Rob has been mostly in the hospital with just 9 days at a rehabilitation center until the third staph infection (infected picc line) landed him back in the hospital. He has not been home and each day edges him further away from the kind of necessary care one finds  mostly at home. For the last two weeks I've watched him slip further away from the man I know, rally a bit, only to lose more of himself. At first I thought this was due to the narcotics he has been receiving, but now I don't think such simple causality is in play.

Healing is a complex matter of mind, body, and spirit.

Later, Rob will tell me, "I'm losing myself." I tell him how some days I feel like I've misplaced myself too. I tell him he's the best man I know and that I think to go through cancer diagnosis and the myriad of serious problems that have accompanied the diagnosis and to not think we are all fundamentally and profoundly changed is to rest in deep denial.

Sometimes words help. Sometimes they are little more than vibrations across our vocal chords.

Today, my brave husband is wearing despair like a too big cloak that he needs help to get out from under and a hospital may well be the last place to find such direction regardless of intentions.

We need to go home.

#SOL16: Lucid Dreaming, Dilaudid, and Cancer

And Full of Sleep (M.A. Reilly, 2012)

"...Into the bowl in which their wine was mixed, she slipped a drug that had the power of robbing grief and anger of their sting and banishing all painful memories. No one who swallowed this dissolved in their wine could shed a single tear that day, even for the death of his mother or father, or if they put his brother or his own son to the sword and he were there to see it done..." Homer, Odyssey

I. 

It's about 5:45 AM when my cell phone rings--the phone I keep bedside since Rob was first diagnosed with lung cancer back in August. 

It's Rob. 

He's calling to alert me that he's okay, but he has been in a train wreck. 

                                                                  Or maybe it was a multiple car crash out on the highway.  

Whichever it is he tells me it is all over the Internet and he says this while trying to open his laptop. He's worried because I'll see it and think he was badly hurt. He assures me he wasn't. When I explain to him that he has not been in any kind of crash and was moved more than a week ago from the physical rehab to the hospital because of a staph infection, he plows on unconvinced and reaffirms that he was in some type of massive accident.

"It was when they were moving me. I'll show you. I can't get my computer to work. I didn't want you to see it and worry."

I tell him where he is again and why and what happened yesterday and he starts to calm down. A profound sadness edges his words filling in the spaces this confusion causes and he begins to realize that what I am telling him feels truthful. He begins sifting and remembers bits of yesterday and for now knows me to be the one to tell him what's real.

"I must have been dreaming. It feels so real."

II.

Rob has been taking Dilaudid for breakthrough pain and with the new spots of cancer being found in his body this week, it is not surprising that the pain has increased. Breakthrough pain is pain that he experiences even though he is wearing several fentanyl transdermal patches on his arm. That's how painful lung cancer is when metastases are present.  Someone once described the pain from spinal metastases as icepicks being driven into his spine. Over and over.

Dilaudid is an effective pain medicine. At midweek, Rob was writhing in pain and the use of the drug ended that misery.  Watching him be in pain guts me. Any touch causes him more pain. It takes all of his energy to simply be.

Unfortunately, dilaudid overuse causes a set of serious problems. When Rob takes Dilaudid regularly, the person I know disappears. He becomes confused, paranoid and vehemently denies the dilaudid is an issue. He sleeps a lot, shakes, and his breathing becomes labored; his oxygen levels fall. I write about this as so often when we talk about cancer we don't necessarily talk about the stuff that rests below the common rhetoric of chemo, hair loss and nausea.  

Rob is off Dilaudid.  He and his doctor discussed it and a different drug will be used when the pain becomes unmanageable.  What's most significant though is the Rob recognized in a moment of clarity his loss of self. 

#SOL16: Freedom Sunrise

Freedom Sunrise (Rob Cohen, 2016)

This is a watercolor painting Rob made while in the hospital. An art therapist visits twice a week and on one day, he painted this.

For the last week I have been looking at it and find each day I come to like it more and more.

#SOL16: A Downward Spiral

House by the Tracks (M.A. Reilly, 2009)

I.

Hospitals are curious places on the weekends. They resemble small cities where most of the inhabitants have left on some summer holiday, some winter jaunt and those few remaining are left to rattle around in a too large place waiting for Monday to arrive. Skeletal crews keep the drugs coming and patients are handed off to partners and residents who arrive at dawn to check in with those who remain.

And still no Godot arrives.

It's late day and across the hospital hall a man exits a room and our eyes meet, then quickly look away, each knowing the knowledge we now have is specific, limited to those who love others who are battling cancer.  To see this in another's eyes is to know an uncomfortable truth. All day Rob has been sleeping off and on. The last bit of afternoon sun, falls across the back of Devon's neck. We are quiet.

Yesterday we learned that the cat scan showed three more spots of cancer in Rob's body whose presence helps to explain the terrible increase in abdominal pain he has been feeling.  Pain so great that being doped is preferable, until being doped becomes another problem that families must attend to. The blood tests confirm another staph infection. This staph is highly responsive to antibiotics, unlike the last two he has had. All of these infections have come at the hands of health providers.

Some days I imagine how different our lives might be if Rob did not have the port put in on the 14th of September--the infected port that starts this downward spiral moving.

I I.

As we enter the sixth month post-cancer diagnosis, I find myself still being momentarily jolted from a fantasy. In this dream, I imagine living like we did: taking a walk together, planning small holidays, doing something impulsive, laughing at a movie, making detailed plans about work, talking with our son about his aspirations, staying up all night and talking, making a meal in our kitchen.

Simple things we no longer can do.

#SOL16: Uncertainty Again

Winter Night (M.A. Reilly, 2014)

It took my son and I hours to dig out after the big snow this past weekend. Neither of us could get the snow blower to move, let alone work, and so we tackled the two feet of snow with two shovels. Rob normally mans the snow blower. While we worked to remove the snow, I was unaware that my husband was being treated for what a doctor would later tell me he thought was a urinary tract infection at the rehabilitation center he has been staying for the last two weeks.

On the morning of December 30, I called for an ambulance because Rob could no longer walk nor stand for any length of time and nothing Dev and I could do could help him to get down the three steps from the house to the car in order to go for a chemo treatment.  Rob was transported to the hospital where he remained. On January 8 he had spinal surgery to reduce the spinal cord compression that the malignant lesions wrapped around his spine had caused. He remained in the hospital five more days and after being fitted with a spinal brace was transported to an acute rehabilitation center where he remained until tonight.

Although I see Rob each day, this past weekend was the exception given the 2 feet of snow.  I was unaware that Rob was even ill. He had told me early in the morning that he was in pain and taking pain medicine.  I foolishly assumed he was talking about his shoulder as he had hurt it earlier in the week.  Throughout the day, I tried calling him and each time I grew more concerned because either he did not answer or when he did he was just waking up and was so unclear.  At 5:00 I called the nurse's station as I was so worried and learned there that Rob was being treated for an infection. Apparently the infection was painful--painful enough that he was drugged and was largely incoherent each time we spoke. The nurse told me she would have Rob call and when he did he had difficulty carrying on a conversation.   I let him rest and tried again and because of the heavy narcotics he has taken, our conversation was one-sided and his speech was incomplete and largely unclear. I called the nurse again at 7:00 after talking with Rob and not understanding anything he had said. There is no terror like the feeling that the man you love is away from you, your care and no longer sounds anything like himself.

A little after 7 a doctor from the center phoned and said they were going to send Rob to a hospital as they were worried given the fever he was running (fever, what fever?) and they were not equipped to diagnose what was wrong.  The initial diagnosis of an infection may not have been correct. His kidneys have stopped working.

And so now, Devon and I wait in the emergency room at the hospital for Rob to arrive. The last time he was home was the morning of December 30, 2 days after our 25th wedding anniversary. This is what it is like when your husband diagnosed with stage 4 lung cancer is beyond your care, beyond your touch.

#SOL16: Lost/Loss

The Hospital Wing (MA. Reilly, Italy, 2009)

I.

Five months ago, Rob, Dev and I drove two of Dev's friends who had spent a week with us to a train in Newark so they could travel home to Virginia. Later that night we decided to end summer by taking a quick trip to Maine. We had planned to stay at a favorite inn and I promised to make reservations in the next few days after Rob's cat scan was done. He had been having some pain in his chest and a chest x-ray showed a smudge that was thought to be artifactual. A day later, our doctor phoned, waking us up to tell Rob that he had cancer. I drove to pick up Dev from a friend's home and we then joined his father at the doctor's office.

There's no language I know that can suitably express the ways in which all of our lives have changed since that call.

No language.

None.

Woman in a Crowd (M.A. Reilly, 2015)

II.

During the last five months I have learned to respond to an onslaught of complications 24/7.  There is almost always a complication that Rob is faced with--complications that I have not anticipated and require response--often immediately. As Rob takes the necessary steps to battle not only the cancer but the many illnesses that have arisen alongside the cancer, the foundation that supports his efforts rests squarely in my hands.

Well intending friends and family ask if I'm taking care of myself and I realize that so often there is little self left and at other times there is a self I have not known that seems to be emerging.

I seem to have misplaced the woman I know I must have been. I'm writing this here as I don't want to forget this later--to gloss over it.  What gets lost and found is important.

This is at the center of loss.

#SOL15: My True North is Now

I.

Outside, the trees we planted three years ago are dying. I've faithfully watered them and used soaker hoses throughout the summer.  But September has been consistently hot and I have lost my way and find myself here.

Now.

Curling brown-edged leaves fill two trees and the fir trees have brown needles. The hydrangea are drooping and even the wild mint is less green.The gardens and trees I usually dote on are no longer a priority.  They aren't even a passing notice most days.

Not now.

II.

My husband has advanced-stage lung cancer that has spread to his spine.  Six weeks ago, none of this was known. He will take an MRI this week to see if the cancer has spread to his brain.

There, I've written it.

              And the urge to erase it is so strong.

But even if I erase it, it will still remain true.
Now is not the time for deception.

III.

As if the cancer was not bad enough, we learned yesterday that a staph infection, most likely contracted during the surgery to put in a port to facilitate chemotherapy treatments is running through Rob's blood. Early Friday morning found two police officers, three volunteer ambulance corp members, and two EMTs in our living room.  This was the day Rob was to take his first chemo treatment. Instead, I heard Rob calling through very labored breathing, Call 911.  And I did. All this before a single cup of tea could be brewed.

At the hospital we were told he likely had pneumonia, although the ER doctor had said, "I wouldn't make much of that bit of fluid in his right lung." Although he had no temperature at home, by 10 a.m. it had spiked to nearly 103 degrees. Covered from toes to chin with multiple blankets, he shivered so that the narrow bed beneath him rocked, defying the locked wheels.

And so he was once again admitted to the hospital.

The next morning we were told by the pulmonary specialist that Rob did not have pneumonia. This was followed by another doctor specializing in infectious diseases of the blood who told us there might be bacteria in Rob's blood and we would have to wait until the cultures taken on Friday could be read.

48 hours.

On Sunday afternoon, we were told there was nothing showing up in Rob's blood, and we all began to feel a bit hopeful that the chemo could be rescheduled. The oncologist made adjustments and had everything reset for today, but by Monday--late morning, Rob was told there was bacteria in his blood and that he has a staph infection.

The cancer treatment, so very necessary, will likely be delayed another month as he sits in a hospital with multiple IV lines feeding chemicals into his body to fight an infection.

Meanwhile, the CT scan he had on Friday shows that the lung tumor has grown larger in the space of 4 weeks.

IV

5 weeks ago we were planning a trip to Maine--a trip to close out the summer. Rob, Dev and I on one of our famous road trips we so love. Then the phone call came--before 8 a.m. and so much has changed.

Know that this is the stuff of nightmares and so perhaps it is not so odd that most nights I wake on the hour pulling myself from the same terrible dream of being tracked by a serial killer at night who flashes knives and slashes at my arms and abdomen; thighs and neck--never too deeply.

And I feel the sting and burn--the slow trickle of blood.

And even when I tell myself--You are dreaming--I wake only to fall back into the same scene over and over again.

This is the type of dream that follows me through the early morning as I make my way into a new day.


V.

Earlier today Rob looked at me as I sat next to his hospital bed and said, "We had to overcome a lot to be together.  Do you remember?"  

We talked about those memories for a bit, pulling forth a few stories from decades ago and then he said, "This is just debris in the road we need to clear. We will do this."

VI.

And we will.


VII.

On Wednesday I'll be shaving Rob's head.  The nurses look a bit askance as they hear us talking.

The day before we got the call, Rob had 8 inches of hair cut off and mailed it as he always does to Locks of Love. Now there is a stubby pony tale of chestnut hair that he says is difficult to lie on.  So it will be coming off.

A close buzz, like my Da wore in the 60s. I've never cut his hair.

Our son calls his Da, the Hippie. He says this with such affection. And I want you to know this: that in all of this terror, there is affection and love and trust and a trueness I have never named before. There is goodness here.

VIII.

On the way home from the hospital last night, I tell Dev, "We are claiming that hospital room as a place of love." 

Each day it looks less and less sterile. More and more lived in.

Living is a a minute-to-minute affair.  
There is no tomorrow.
There is now--that is my true North.


IX.

And the one simple truth I hold close is that in this often wild ride with Rob, I have never loved my husband more.