Stage 4 cancer. Hope lives, even as we run the marathon.  While metastatic breast cancer can and does kill quickly, for many of us this disease is a marathon. When I was first diagnosed over six years ago with a particularly aggressive type of the disease, I had some close friends ask me what I was feeling and if I could comment on how cancer was affecting my idea of mortality and my future. Interesting question. I had been planning a relatively normal existence. You know, work, retire, travel and hopefully have grandchildren to visit. Now I was suddenly thrown on the fast train to cancer-land, where all things eventually perish.

Stage 4 cancer. Hope lives, even as we run the marathon.

I guess the first thing I realized was that no one really knows who will and who will not survive a disease. Second, all of us are dying and no one is guaranteed tomorrow. Third, most people do not like to acknowledge their mortality let alone have a candid discussion about it. Statistics give us benchmarks from past data, but are not predictive for individual cases. The first one I found had my expiration date pegged at less then two years in the future. So the real answer about prognosis is anybody’s guess. Or, if you like more detail, “It depends.” How fast cancer grows or not, how many drugs work on your cancer, how many new drugs are approved during your remaining life and sometimes how many trials you have access to, along with the quality of care you receive all have influence on the final number. How good are your resources (coping skills, support group, insurance, finances) etc.? Is your general health good or not?

I have found that the scenery along this long, very long race, changes with time. Some things get easier. I rarely have anxiety about upcoming body scans. I am a pro at managing chemotherapy side effects. I found that taking a week or two off of treatment does not significantly increase my cancer. Instead of being in warrior mode, I have learned to relax and just consider my cancer as an annoying companion. Every ache and pain makes me think about cancer, but rarely puts me in emergency mode. Systemic chemotherapy drugs are demonic but doses can be lowered. Targeted drugs have way fewer side effects, but are not perfect. And most of all, I have been able to travel, able to enjoy life most days and I now have three grandchildren providing frequent amusement.

Some things are never going to be easy. Side effects are inconsistent and at times put you on the couch for extended rest periods. Some side effects can result in hospital stays of several days or more. Others wear you out before you have a chance to begin. Extended years of treatment result in faster aging and the attendant conditions. Treatment also results in permanent impairment (lymphedema, neuropathy, cognitive impairment, fatigue) to name a few.

Some things are downright ugly. Your body deteriorates from treatment at the same time your cancer is getting smarter at outwitting drugs. The new treatments on the horizon have uncertain efficacy and usually several years of waiting for approval. By the time some are available, your body may not be able to tolerate the side effects caused by the treatment. Support group friends die on an all too regular basis. Survivors’ guilt is common. Why am I here when a mother of young children is dead? Doing anything that requires energy output becomes increasingly difficult or impossible. This includes things like normal domestic chores, playing with those grandchildren and travel. Your personal world narrows as you become less able to be a “full participant”. Some friends may disappear from your life altogether.

Most of these things or similar ones can and do occur with advancing age. Unfortunately, many of us with metastatic disease are not yet “senior citizens”. We are grateful to be alive, but lacking in health and vitality, we are sidelined, watching others participate in the life we planned to have. At some point in this marathon, we do realize that the race will only end at the time of our death. The running gets more difficult, yet the will to live keeps us trying additional treatments.

Cancer is stronger than our physical self.

So is our spirit.

Katheen Strosser, a retired Associate Professor at Edinboro Univesity of PA, and has been living with Stage IV Inflammatory Breast Cancer since April, 2009.  She is a grandmother with hopes of living a long life and buying granddaughter Grace her wedding gown.

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