Living people don’t talk to each other much in the cemetery—I cannot speak for the dead. Most of the time, if you see someone, there is a brief word, a gentle smile or nod. Over time, more than that may develop, but most of us are lost in our own thoughts, wrestling with our own grief. We talk to our dead and sometimes the conversations overwhelm us.

Yesterday was gentler than the last three months have been—and more difficult. The difficult paradox is that an easy anniversary raises as many issues as the more difficult ones. I am an analytical creature; I want to understand why June was so hard and July so much less so. Does it mean August will be better as well—or will it be worse? I’ve been through this cycle too often to think the storm of grief is finally lifting.

The awful truth about grief, known by all of us who have lost someone dear to us, is the grief never leaves. Sometimes it lessens or changes shape. But it is always there—like the hole of a missing tooth or the pain in a phantom limb. We may forget our loss for a few hours in the company of friends—but it waits patiently for us to be alone again.

Carcinoid/NETs can be like that, as well. Patients have good days, good weeks—sometimes even great months. Then they eat something, run into a piece of stress—or sometimes nothing at all. Their stomach bloats with painful gas, the ever-present partial diarrhea erupts in full form, the insomnia kicks in and leaves them even more tired.

We have no more cure for NET cancer than we do for grief. We have palliative treatments that can make the symptoms more bearable for a time. But the patient knows eventually the tumors and the hormones they produce will again overwhelm those drugs and treatments. None of us talks about a cure. We talk about progression free survival, surgical debulking, and alleviation of symptoms.

I watched Jane wrestle with the disease for years. Today, I watch other patients enduring the same grinding war against the disease. I see them searching for any treatment—from whatever source—that will relieve the diarrhea and the gas and the bloating and the insomnia and the flushing. They experiment with black raspberry powder, fight with insurance companies over coverage of octreotide and other somatostatin analogs, struggle with decisions about liver embolization and surgery. Except for a fortunate few, they have to struggle to educate their doctors and oncologists who know too little about the disease and how it works.

We have too few specialists, too few options, too little knowledge.

In August I will observe not only the 44 month anniversary of Jane’s death, but also the four-year anniversary of her diagnosis. Many things have changed in the carcinoid/NETs world in that time. We know more about the genetics of carcinoid tumors and understand better how they do what they do. We have new drugs in the pipeline that will, we hope, more effectively slow the course and symptoms of the disease. PRRT is now in trials in the US and may soon be more broadly available. Had we had the diagnostic tools and awareness of the disease we have now even ten years earlier, Jane might still be on this side of the grass.

She isn’t. I live daily with that knowledge—and that knowledge drives me each day to try to reach just a few more people—to try to make a difference in their lives and make their battle with NET cancer a little easier, a little less lonely, and a lot more hopeful.