That’s how I ended my first blog entry of this year. Days after that, my cousin’s husband died. He had been diagnosed with ALS 17 months earlier. My cousin’s life and mine could not have been more different. She was a feminist who stayed at home to raise three children.
While I had a somewhat roller-coaster alternating with bumper-ride-of-it life, hers was fairly tranquil in its domesticity. Her husband and I could not have been more different as well. He was baffled by the emotional carnival-like rides of my life—I thought his was like riding the merry-go-round.
I wondered when he was diagnosed how he would deal with it. Well, all my perceptions of him were tossed to the winds. He looked at death directly and faced it with great courage, grace, and generosity. It was clear to me that what he saw in my cousin was a feminist who could stay at home. Together they were a good team that raised three children who have become lovely adults. They created a healthy family that has grown to include partners and two grandchildren.
It’s heartbreaking that his life with this family was cut short.
I had thought about writing something about this earlier, about his last journey ‘round the sun, but got wrapped up in the VDay production of A Memory A Monologue, A Rant, and A Prayer. Then, when I returned from dress rehearsal, the night before opening, Tom got the results of his PSA test. Normal is considered 2 to 4 ng/mL. His was 53.
I got little sleep that night. Fear had started to creep in. Blood tests, exams, and a biopsy. Then the diagnosis. He has prostate cancer. The PSA was so high, they were concerned that it had already metastasized. More fear as he got sent for bone scan and CAT scan, then the excruciating wait for results.
The scans were clear. The urologist suggested that the course of treatment would likely be radical prostatectomy, radiation, and hormone therapy. He referred us to a surgeon in Seattle because the local hospital (Port Angeles) did not have the equipment for a robotic (laproscopic) procedure.
Our appointment was at 9:30 on Monday. We woke at 5:00 to drive to Bainbridge Island where we caught the ferry. The surgeon was excellent. Clearly knew his stuff and very straightforward. He did not recommend surgery. Because of the high PSA, he said, it was almost certain that the cancer had spread microscopically to the surrounding tissue. The operation is really invasive, quite traumatic, and would likely leave cancer behind.
But, this was treatable. They have found, he said, that radiation therapy combined with hormone therapy has the same results as surgery combined with radiation and hormone therapy.
Crossing water, riding the ferry was a soothing way to take it all in. While surgery had held out the promise of cure, we were also both relieved that he didn’t have to go through its daunting consequences.
On Tuesday we visited the radiation oncologist, a delightfully sweet man who explained what would happen from here: twelve weeks of hormone therapy followed by 9 weeks (5 days a week) radiation therapy and continuing hormone therapy. I asked him what drew him to the specialty. He said he was fascinated by the physics of radiation.
That means to me that the combination of his skill in connecting with the patient and his understanding and curiosity with the physics of radiation puts Tom in very competent hands.
We’ll be done by Thanksgiving he said.
Before we left the center, we spoke with a Social Worker who is referred to as the Patient Navigator. What better title could there be. She got us set up with a support group, offered us transportation if we ever needed it, and convinced Tom to go ahead and get some sleep aids. It would take time for the level of fear and stress to be relieved, and sleep was important to bringing it down.
I am so impressed with our provider, Olympic Medical Center. I have dealt with the medical world off and on for a very long time, working as an administrator, being a hospice volunteer, being the navigator for my parents and in-laws as they wended their way through various medical systems.
It is a huge relief to have someone to rely on—someone who knows the ins and outs of the system we are a part of—a system that includes a navigator.
After five weeks of uncertainty, Tom and I are settling into hope. We now believe that he will be one of those men who die with prostate cancer, rather than from it.
I cannot leave this story without telling the backstory. The urologist and surgeon both think that this cancer has been going on for three to four years, which coincides with when we lost our health insurance. Because of the downturn in the economy, we could no longer afford the $2000 monthly premium (we had already increased the deductible twice) we could get through our business. The premium costs were high because insurance policies through a business could not exclude someone due to pre-existing condition. We were denied cheaper health insurance (basically catastrophic insurance) as individuals because of existing conditions that included visiting a doctor once in the previous year for a minor illness or injury. The insurance offered little, actually. We would have been on the road to bankruptcy by the time it kicked in.
We rolled the dice because we had both been healthy. We didn’t have yearly tests. The Affordable Care Act kicked in a month before Tom was eligible for Medicare. It took us another eight months to find a doctor. We live in a rural area, so we had to wait while Olympic Medical Center geared up.
Had we discovered Tom’s cancer during the time we didn’t have health insurance, God only knows what we would have done. It is not only the cost that makes access to health care daunting, it is also finding places that will take you if you don’t have insurance. You are left alone to wend your way, looking at the daunting cost of each diagnostic procedure and treatment.
I find myself increasingly enraged when I hear talk about market-based medicine, replacing Medicare with vouchers, giving tax credits for medical savings plans. These are suggestions made by delusional people who have clearly never had to pay for their own health care, or who are so wealthy they don’t have to worry about paying for it.
Medical care is a system. A complicated one. I don’t need PSA tests, but they need to be part of our medical system. I am willing to pay the price for them because the human cost is worth it. It is the cost of living in a society that is humane.
We have figured out that a silo-based approach to technical infrastructure is expensive and inefficient. I worked on a project to implement an enterprise architecture at the California Administrative Offices of the Courts. It would allow one county’s court system to talk to all of California’s court system. Richard Alan Davis, the man who kidnapped and killed Polly Klass in 1996, was stopped by police with her in the car. But, because different counties’ information systems didn’t communicate with each other, he wasn’t flagged as a danger. If the systems had communicated, perhaps Polly Klass would be alive today.
It’s the same with our medical system. There is no freedom in not having access to health care. When I was the administrator for the geriatrics program at SFGH back in 1980, the goal was to train health care providers in a team approach to delivering health care. The team consisted of medical students, dental students, nursing students, pharmacy students, and social workers. Together they provided a complete view of the patient, rather than a symptom that could be cured or not.
It’s called health care. And that requires a system. The marketplace cannot provide that because its goal is to make a profit based on three months’ projections. Health care profitability has to be measured in a much different time line.
There are daunting times still ahead for Tom. I think for me, the most daunting thing is my sense of powerlessness. I am here to support him and love him, but I am powerless to fix it.
Once, I was awakened in the night with a visceral fear of losing him. I felt it throughout my body. Whatever numbness prevents us from imagining such a thing had abandoned me. What I couldn’t imagine was how I would survive such a loss.
I am back to believing that Tom and I will grow old together. Unless we can be Baucis and Philemon, one of us will be the one left behind. But that once again seems far in the future.
Our medical technology is very sophisticated in the way it can save and prolong life. But only if we have access to it. To those who have the power to dismantle what has been started with the ACA (as flawed as it is), you need to know that everyone must have access to a systematic approach to health care. No poor or middle class family can ever save enough in a medical savings account to pay the cost of a devastating illness. Catastrophic insurance is just that. Takes care of a catastrophe that might have been prevented had there been a health care system that was accessible regardless of income.
Health care is a right. Health care is freedom. I would ask those who have the power to dismantle or create a human health system to imagine the visceral reality of losing a loved one. Then imagine that that death did not have to happen had the loved one had access to a health care system that is measured in human costs, rather than one that is market driven.
Note: the Baucis and Philemon graphic is by by gherkin-chan