Tuesday, April 26, 2016

#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 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."


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.


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.