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I have not responded to the kind responses I received following my last post, but I promise to do so. One of you wrote, “Let me know how I can help,” and your words has been in my heart daily. Another person (a Canadian) wrote about the horrors of healthcare in America, and this email was partly inspired by him. Thank you all. You help us keep going.
Here’s how we can afford Peggy’s new drug. Peggy is on Medicare, (a government insurance plan for the elderly and disabled), plus she and I have private health insurance and private drug insurance. Under Medicare, the maximum drug cost (from all sources) that she has to pay is $2,100 per year. Therefore, the distributor of her new drug cannot charge her more than $2,100, and she has already spent much of that $2,100 on other drugs.
Peggy and I pay $10,485 a year for health insurance because but that’s because we chose a high-end (Plan N) Medicare Supplement plan instead of a Medicare Advantage plan. Advantage plans are often cheap but complicated, and people who have them frequently fail to receive the benefits they expected. Supplement plans are often expensive but straightforward, so our insurance companies cannot refuse to authorize Medicare approved tests or procedures; cannot use indecipherable legalese to cheat us out of promised benefits; and cannot limit our choice of doctors, hospitals, and pharmacies. We also have good drug insurance. One of the drugs that I take for back pain would cost $754.69 per month without insurance, but I pay nothing.
Peggy is taking a dead woman’s medication, because when the drug hit the market, the demand was so great that the company that manufactures the drug couldn’t keep up. If Peggy didn’t have this woman’s medicine, she would have run out. Although half of patients who take the new drug will be dead within a year, we are living on the hope that she will survive for many more years. As she used to say before getting cancer, “I’m no fool, no sirree, I’m gonna live to a hundred and three.”
As for how the drug is effecting her, she complains that “everything tastes bad, and her diabetic monitor wakes her up repeatedly at night. She also complains of chills, nausea, fatigue, weakness, dizziness, confusion, mouth sores, stomach cramping, lack of appetite, spatial disorientation, and split skin on her fingers. She tires easily; her hands tremble; her face oozes; she has lost 17-pounds since diagnosis; she needs daily naps; and complains that her insides vibrate like Jello. She has trouble remembering recent events and how to perform simple tasks. Last week, I had to guide her to the elevator of a building that she had been in hundreds of times, and, as we were driving down familiar streets, she had no idea what part of town we were in.
On the bright side, she boasts that, “I’m a survivor;” takes frequent walks; works-out with weights; and spends happy hours arranging her button collection.
I wrote the above a few days ago, but Peggy didn’t want me to send it until her last CA-19-9 result was available. Her numbers are down from a high of 7,700 in April to 294 today (normal is 0-39). They have been dropping dramatically since she started Rasonque, but, unfortunately, the side-effects have gotten so bad that Marc, her oncologist, suggested that she reduce her dosage.
Marc also suggested that she might try to feel more happiness in view of the fact that she has lived so long since diagnosis and is doing so well on the new drug. I doubt that he would feel happy if he was experiencing the side-effects Peggy is, so I took his words to say more about him than about her.
How oncologists bear constant death is beyond me, but having observed Marc for well over a year, I’ve come to think of him as a doctor who is skilled and caring, but also a doctor who takes the pain of his patients into his heart to the point that his emotional resources are taxed. Peggy and I believe that he needs to be gently treated gently, and we are trying to honor that need.
