Original Posting At http://www.martycauley.org/2018/02/i-thought-id-be-dead-by-now.html
For the record I thought I’d be dead by now. I know that is an odd thing to say, and yet it is true. When you expect to die fairly quickly and you keep living it requires a reframing of your reality. In July this year I will take the last marble out of my “five year jar” and then have to start putting them back in I guess. Meanwhile I’m trying to figure out how to keep living and making it count.
When I got my diagnosis of stage IV cancer in July 2013 my prognosis was not particularly good. Actually it was bad, like go and make your final arrangements bad. Stage IV means that you have distant metastasis. That means that no matter where the cancer started it has spread far and wide, usually to other vital organs. In my case it is fully involved in liver metastases, as well as some other places. What we didn’t know until I had several more tests was that I had neuroendocrine cancer. Neuroendocrine cancer, or NETS, is slow-growing and moderately controllable with proper treatment. So every other week I spend a half a day or more with my friends at the Duke Cancer Center to receive an infusion (drugs pumped directly into your veins through a port permanently installed in my chest). Additionally, every twenty-eight days I receive a deep subcutaneous monthly
shot (yes it hurts). Every three months or so I go for a set of scans to tell me one of three things: either cancer has gotten worse; it has gotten better; or it has stayed the same.
The good news is that the treatment is basically working. With the exception of a few setbacks over the last four and a half years requiring a change in chemo, the treatment is holding the cancer at bay. It is not really getting any better, but it isn’t growing by much either. My marker tumors, the ones they measure for a baseline, usually grow by just a few millimeters every few months. This doesn’t seem like much until you multiply it over time. Just this week I realized that all of my tumors have more than doubled in size since July 2013.
The treatments are not without some side effects. There is the fatigue you get when you pour a bunch of cancer inhibiting chemicals into your body every two weeks. There is the loss of some muscle mass, delightfully called cancer wasting, that occurs when you battle this kind of illness. There is always the shadow of depression that hangs around the edges as you realize all the things you can’t do. There is a cost.
Nobody really tells you the how much it costs to survive. With my first treatment every January I am billed for my annual maximum out-of-pocket for my health insurance. Then it takes me the next few months to pay that off. Prior to having cancer we had a great house in the mountains of North Carolina. The back porch overlooked the Pisgah National Forest. In the fall you could smell the crisp autumn leaves and feel the coolness of winter approaching. In the winter the stars were so clear and so close you thought you could touch them. In the spring, the mountains burst alive with color in celebration of new life. When the cost of treatment began to set in, we realized that we couldn’t keep the house in the mountains and pay for cancer treatment. Cancer treatment won. We sold the house and with it our dreams of retiring in the mountains.
Don’t get me wrong. I am one of the lucky ones. I have good health insurance, an understanding employer, and a job that is flexible enough to allow me to be gone every other Friday for cancer treatment. I have a supportive spouse. We have the income to pay for the treatments without causing complete financial devastation. I’ve sat in the waiting room at the Duke Cancer Center many times and heard stories of families on the brink of financial collapse due to the cost of cancer. And that is just the financial cost.
Cancer breaks you. It also breaks the people who love you. There is an emotional and psychological cost that goes far beyond the financial one. You simultaneously carry with you a sense of hopefulness and the reality that the struggle will never be over until it is finally over. When you lay in the MRI machine or the CT scanner every few months you wonder if this will be the time when things go very badly. Sometimes even hearing good news is more like waiting for the other shoe to drop than a reprieve.
Over the next few months, I am going to return to blogging. This time it will be about reflections of taking the long way home. Realizing that the journey that you thought was going to be brief and intense is actually a long, slow climb. I am going to reflect on the great blessings, and some of the struggles. I am going to talk to other people who are taking similar journeys and hear what they have to say. I hope you’ll stick around as we take the long way home.