#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.

#SOL16: The Fall

Rob in Intensive Care after the 7-hour VAT Surgery.

Rob in early September, recovering from VAT Surgery.

Rob waiting for first chemotherapy in October after the 1st staph infection.

I.

It was mid-October when Rob finally came home from the hospital, his third stay in 6 weeks and began two weeks of radiation. By late October his strength and coordination began to wane even though we denied both. At times it feels necessary to not say what is seen when what is seen is so devastating. We chose to believe that Rob would literally beat the odds and with stage 4 lung cancer, the odds are never good. But new treatments were available and we knew that on the horizon was immunotherapy and that he was just 60 years old. We had been assured by the infectious disease doctor that the staph infection Rob had received during an earlier surgery in mid September had been treated and he was cleared to receive chemotherapy treatment. At 2 pm, two days before Halloween, Rob walked by himself into the treatment center.  I walked alongside him just to be there if he needed support, but he was able at this time to still walk. Throughout the treatment he joked with the nurses and by the time we got home we were both exhausted but also full of hope because finally after two months, Rob was able to begin treatment aimed at the cancer.

By the time the second staph infection surged through his body a week later, Rob was unable to walk and had a growth the size of a grapefruit protruding from his chest. He had run a slight temperature two days before and I called the oncologist's office and was assured that was normal. I was home alone with Rob on that Friday, November 6 when I went to wash him and saw the growth on his chest for the first time.  Rob had a follow up appointment with the oncologist so I got him into the car by having him sit on the bench of a walker and pushing it to the car. I couldn't get Rob into the office he was shaking so badly, so the nurse came out took one look and called the doctor. The oncologist who was at the hospital at the time told me to drive immediately to the emergency room.

I don't recall how Devon got to the hospital, I think perhaps by cab as he had been at school, but we were all in the emergency room for the next 12 hours as the infectious disease doctor, the oncologist, the surgeon, and the emergency room doctor all weighed in on what to do. Rob was barely conscious, mostly in and out of it as his body shook and convulsed.  He was given some kind of antibiotic fairly quickly. Finally by about 7 that night we learned that Rob needed thoracic surgery as an abscess had formed in his chest. The doctors explained that the abscess was resting quite close to the right ventricle of Rob's heart and if it continued to grow or shifted, it would likely kill him immediately. I refused to have the first surgeon who had put the infected port into Rob's chest operate on him and decided that Rob would be transported to a nearby teaching hospital for surgery. At that point, all of the doctors, except the emergency room doctor excused themselves and Dev and I stayed with Rob until after midnight when he was finally settled in a hospital room. An hour after we left, Rob had a 'cardiac incident' and after he was stabilized he was moved to the cardiac intensive care where he remained until that next morning when he was transported to the next hospital.

II.

I'm writing this in the hope it might help others facing cancer.  Rob and I simply did not know that it isn't the cancer alone that must be battled, but also the potential for all the things that can go wrong each and every time a cancer patient steps into a hospital. Staph infections are not unusual to get at hospitals and the damage done can be enormous. We did not select a teaching hospital for the routine port insertion and this error ended any quality of life Rob might have had. And though lung cancer killed Rob, the three staph infections that occurred at the hands of doctors and nurses in the 6 months he was being treated made his life from diagnosis to death, a living hell. After the first staph infection, Rob would never recover. The downward spiral continued unabated and the damage from each infection was huge.

By early November we had switched all of Rob's doctors to those who practiced medicine at the new hospital. We realized the value of a team.  On that Monday, I paced the waiting room while Rob underwent a 2-hour thoracic surgery to remove the abscess and his fifth rib which had been destroyed by the staph. The fifth rib rests just outside the apex of the heart and for weeks after the surgery I would notice the asymmetry that now was Rob's body as the absence of rib created a dent in his chest. The surgery was a success and Rob spent fifteen days at the hospital. By this time he had spent more than 30 days in hospitals since the end of August. By the time he would come home to die, that number stretched to 100 days. He came home the night of my birthday which is the day before his birthday. The admitting doctor at that time did not want to release him as blot clots had been found and when I spoke with her on the phone I simply said, He may never have another birthday and he wants to be home. Isn't there something we can do? She told me there was not and there would be other birthdays and I was so frustrated I hung up on her in tears. She called me right back to tell me I had been rude. I sometimes wonder about the emotional distance that some doctors maintain. She was not one of Rob's regular doctors and I suspect that she never learned how wrong she had been.  Rob would never see another birthday and I am glad I was insistent.  Our new oncologist intervened and in addition to administering the antibiotic to fight the staph infection three-times a day, we also had to inject blood thinners each day into Rob's thigh.

Towards the end of November I watched Rob as he slept in a reclining chair in the living room where he mostly lived. He could no longer walk without support and he had not been upstairs to our bedroom since mid-October. As I watched him I remember thinking that if I was hearing about Rob's medical issues and did not know him, I would be thinking that his time on earth was nearly done. But that simply isn't how faith works. Or love. Like Rob and Devon, I too believed Rob would live until we were told there was nothing left to try as the cancer had spread throughout his body. By then, Rob had suffered through spinal cord compression, neuro-spinal surgery, and the start of rehab where he contracted the third staph infection.  We thought he had at least another six months to a year to live, but that simply was not true. Less than 3 weeks after that prognosis, Rob would die at home.

III.

For the longest time I would replay that early September morning--what would have been my Dad's 99th birthday--when Rob and I traveled to the hospital for the same day surgery of a port insertion. A minor surgery taking less than a half hour we had been told. We were on our way home before lunch and looking forward to meeting with the oncologist later in the week and feeling good that Rob would have his first treatment in September.

Mostly, I want to recall that day, roll it up as if it did not happen. Shout to God, "Do Over. Do Over. Please." 

But none of that is possible. There are good people in this world for sure. Rob was one of the very good ones. His death diminishes us. We are the worse for it.

#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: 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?