When I was first diagnosed with leukemia I was told there was no cure for my type (CLL 17P). BUT, there was a new drug going through the fast track for FDA approval that was showing impressive results in slowing the rate of growth of my disease. Hallelujah for that news.
18 months later, when my blood counts began to dip into concerning levels, that drug was approved by the FDA and I was one of the first patients to receive it outside of clinical trials. So I am on the cutting edge of cancer treatments, and will likely be one of the first to outrun the disease, OR, as Steve Jobs said about his cancer, one of the last to go before it is cured. I will be on this new drug IBUTRINIB for the rest of my life was what the doctor told my wife. But I actually figured out that I will be on it until it stops working, and then, we will come up with another plan.
My wife Kate and I got home and were told to expect a call from the pharmacy about beginning our prescription. The call came, but it didn’t go as planned. The cost of the drug was over $120,000 a year and I was told my insurance didn’t cover it. WHAT? I gulped. I asked the person on the other end of the phone "what are the other options?” she said, "well, there are a couple of other companies you can call to see what their plan will cover." So that is what we did.
Fortunately, a company did figure out a way I would qualify for the drug and it costs me $10 a month. Big difference. Cancer is expensive.
But not just financially. It is probably equally or more expensive in the realm of relationships. Marriages, friendships and families all suffer and are splintered or worse yet, implode, over treatment and care for a cancer patient in their midst.
One of the great things that Duke Oncology has done is treat the entire family. When my father in law was diagnosed with brain cancer, we all talked to members of the medical team to get our questions answered and to develop a plan on how to talk to each other, and how to talk to Papa, Grandma and to the grandchildren. Those sessions were invaluable to our family.
I think the most overlooked toll that cancer reeks on a family is to the spouse who usually is the primary care giver. The physical exhaustion and emotional burden every day is unimaginable for a trained professional, let alone an unsuspecting husband or wife who has to care for and often watch the worst things happen to their partner. And then somehow find a way to be emotionally strong for everyone, all the while having no idea how to deal with their own feelings over the crushing situation.
Cancer is expensive in more ways than we can imagine, and we have no idea, until it happens in your circle of life.
Pray for the patients who have the disease in their body, but don’t ever forget to pray for the families and the care givers and especially the spouses of the people with the cancer, because this SOB of a disease shows no mercy and takes its toll in ways that I hope most of us never experience.
Amen and AMEN