Sunday, August 21, 2016

#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.

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